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~Seek first to understand, then be understood~
If you're looking for information on a particular topic, type that word in the search box below. If I have written about that subject, a list of posts will appear. If no posts come up, I haven't written about it...yet. Emails, and questions in the comments section for possible posts, are welcome.
I have a "friend" who shows up once a month. She turns my world upside down, over and over again.
I am a good person, caring and sweet, but when she comes to visit, I could rip off your head.
She takes no prisoners, foul words she does spout, I try to keep the words in, she lets them come out.
People don't understand me, or what this is about, to have this creature inside my head.
I despise who I am, half of the time, I feel sorry for my daughter, family and friends.
There's no way to describe it, for those who don't know, it's a living nightmare, she really needs to go.
~Neysia Manor, Rest in Peace

Sunday, November 15, 2020

Singer-Songwriter, Grace Gonzalez, Joins Forces with Global Charity to Raise Awareness for Debilitating Health Condition That Puts Women “Out of Commission” for Nearly Half Their Life

BOSTON, MA, October 2020 -- Singer-songwriter, Grace Gonzalez, first found musical success when her songs gained the attention of Grammy-Award winning producer Trina Shoemaker, American Songwriter Magazine, chosen as a Yamaha guitar ambassador, and in a 2020 Toyota U.S. ad campaign featuring her own, “Little Piece of Home.” Now, Grace has turned her musical talents to a life-saving cause with the release of her new single, “Out of Commission.”

“Out of Commission” is about mental health and specifically the cyclical anxiety and depression that takes Grace out of commission after she ovulates or 10 days before her period each month. The condition she suffers from, Premenstrual Dysphoric Disorder (PMDD), is a life-threatening cyclical, hormone-based condition that is commonly underdiagnosed, misdiagnosed or dismissed entirely by many in the medical community. PMDD impacts approximately 1 in 20 women and AFAB (assigned female at birth) individuals of reproductive age - a staggering 60 million worldwide.  Symptoms include severe depression, mood swings, irritability or anxiety in the two weeks before menstruation.

“I have received my deepest inspiration during “hell week,” said Gonzalez. “It is in that time, where I feel so disconnected from myself and the world, that I can channel my suffering into songs. I feel so lucky for the gift of songwriting and don't know how I would get through the depths of PMDD without it. And I’m honored to help shine a light on this devastating condition by working with the International Association for Premenstrual Disorders (IAPMD).”

Grace’s journey with PMDD began when she got her period. Like many, her life changed drastically and the cyclical life-altering symptoms occurred for years without a clear understanding or diagnosis. At the age of 21, she withdrew from college due to severe cyclical anxiety and depression, and was finally diagnosed with PMDD. After her diagnosis, Grace turned to IAPMD for information and support when she was feeling lost and alone. “IAPMD helped me make sense of it all and find ways to move forward and heal,” added Grace. 

“We’re grateful that Grace is helping raise awareness and funds for PMDD,” said Sandi MacDonald, IAPMD Co-founder and Executive Director. “As an IAPMD Ambassador, Grace is sharing her music and her story to help shatter the stigma and accelerate progress toward a world where people with PMDD and PME can survive and thrive.” 

The IAPMD’s Global Survey of PMDs 2018  showed that 30% of those experiencing the condition have made a suicide attempt during a PMDD episode. Shockingly, patients also waited an average of 12 years for an accurate diagnosis and saw six healthcare providers in the process. Although PMDD has been included in the Diagnostic and Statistical Manual of Mental Disorders (DSM) and International Classification of Diseases (ICD) for years, it continues to be disregarded or misunderstood by doctors and the general public. 

About IAPMD:

The International Association for Premenstrual Disorders (IAPMD) is the leading patient-led health organization with a mission to inspire hope and end suffering in those affected by Premenstrual Disorders (PMDs) through peer support, education, research, and advocacy.  Since our founding in 2013, we’ve helped over half a million people from more than 100 countries find answers, community, and hope. What began as a collective of fellow sufferers has grown into a global movement accelerating progress being made around the world on PMDs and PMDD in particular.

About PMDD:

While PMDD is directly connected to the menstrual cycle, it is not a hormone imbalance but rather a severe neurobiological reaction to the natural rise and fall of estrogen and progesterone. Symptoms occur the week or two before menstruation and go away a few days after bleeding begins. There is no blood or saliva test to diagnose PMDD, but these tests can rule out other underlying disorders. Diagnosis is done by tracking symptoms for at least two menstrual cycles. 


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Sunday, February 16, 2020

What Real Love Looks Like

Since February is the month for relationships, I've linked to a post by fellow author, blogger, and women's health and wellness advocate Tara Mandarano, written about relationships.  It's not PMDD specific, but the wisdom in it applies all the same...  

A real relationship is two flawed people refusing to give up on each other. It's encountering everyday obstacles and unexpected hurdles and finding a way through them together.
It's talking it out when you'd rather give each other the silent treatment. It's listening to the other side of the story when you believe yours is the only valid perspective.
It's holding hands and hugging it out after an argument. It's hanging on for dear life when you go through emotional hell and feel totally beside yourself.
It's finding time for each other at the end of the day, when you're feeling fraught and spent and just want to read a book or scroll through your phone.
It's putting away your phone.
It's not hiding things on your phone.
It's being together in the same room even when you feel galaxies apart. It's building a bridge between hurt feelings and new beginnings even though it's so, so hard.

To read more, please go here.

Tara is also the author of an essay in the newly released BIG: Stories about Life in Plus-Sized Bodies.  

Tuesday, October 8, 2019

PMDD and Suicide in the Luteal Phase Needs More Research: You can help!

Hey all
I need help.
Tonight I piqued the interest of my psychiatrist when I quoted a post from another PMDD group, "23 completed female suicide autopsies were performed - 22 of those were in the LUTEAL PHASE of their cycle." His jaw dropped. 
Last night I did 20 mins of research into the following theory that has been in my head for the last 12 months. 
Here it goes:
The true number of completed suicides resulting from PMDD cannot be known until all coroner reports are researched to see where the individual was at during her menstral cycle. Right now, even if 100% were in the luteal phase or menstruating phase of their cycle, it is highly likely those individuals would have a previous mental health diagnosis of another kind. For example, borderline personality disorder or bipolar, given PMDD mimics the symptoms of these two illnesses. Therefore, the completed suicides would then be attributed to either of those illnesses and not PMDD. 
IF PMDD is the culprit and merely mimicking BPD or BP, until further research is done and looked at, PMDD suicide rates will not be truly known. The accuracy of actual lives taken by PMDD cannot be measured. 
Therefore, it is imperative that further research into historical data on completed suicides and the menstral cycle stage the individal was at during the time of death is done - the true cost of lives due to PMDD suicides will not be known and neither will the severity of PMDD and it's potential to kill be taken seriously (thus SAVING lives). This is intricately connected to the amount of knowledge and extensive research that has been completed on BPD/BP and the lack of such for PMDD. 
If menstral cycles are indeed playing a part in the timing of completed (or attempted) suicides, it is currently the ghost in the machine.
Until this is ruled out, or confirmed, the true cost of life via PMDD deaths will not be known and neither will PMDD be taken as seriously as these other well known illnesses that it mimics. 
Could it also be that these illnesses are so prevalent in women to men (75:25) because of the mimicking and this unreasonable ratio of women to men is because PMDD is being counted as BPD or BP? If studies were completed and found menstral cycles to be a factor in completed suicides, could this be the turning point in diagnosing and treating PMDD in a more efficient and successful manner? 
Could understanding if menstral phases play a large part in completed suicides completely change the way in which the entire mental health system treats women? 
If the answer is yes, we are talking absolutely ground-breaking earth-shattering information that would change general practice, gynecology and psychiatry. It would blow everything out of the water. All of it. The whole medical industry would be brought to their knees... because right now, it is dismissing it as merely bad PMS when in fact, it is possibly one of the largest contributing factors to SUICIDES in the female population. 
So while my Doctor listened to me ramble about this, at the end of the spiel he told me that he thinks I'm on to something. I have spent an hour on Google and I am finding research mostly in Asia and India into this, but some say there is no evidence to show menstral cycles play a part in suicide while others have found 90% of 200 women were either menstruating or in the luteal phase when they died! 
If I can find studies for him - good/bad/ugly/useless, he is going to present it to one of the most prestigious universities in Australia as a PhD Thesis option for students. 
He flat out agrees that something is not right here. 
I'm asking if everyone can help me out and comment with links they find into anything about this (please include the citation and page number). I can't do this alone and I really need some help this time. 
I feel this may be a big opportunity. I could be wrong, but ANY research into PMDD and ANYTHING that could save another life from being stolen by this illness, is worth our time. That's why we are all here. 
Australia is starting to light up and the ball has started to roll. This is another opportunity to possibly change something most of us think we won't live to see happen. 
Maybe, we will. 

Friday, June 14, 2019

World Health Organization Validates Premenstrual Disorder as a Global Health Concern

BOSTON, MA, 14 June 2019 --  In a landmark decision, the World Health Organization (WHO) has added Premenstrual Dysphoric Disorder (PMDD) to the International Statistical Classification of Diseases and Related Health Problems, Eleventh Revision (ICD-11), validating PMDD as a medical diagnosis worldwide and confirming the growing scientific and medical understanding of this little known, debilitating and life-threatening condition.

This groundbreaking move gives PMDD its own ICD code (GA34.41), which will help drive diagnosis, treatment, reimbursement, and research. A staggering 60 million people globally, 1 in 20 people with menstrual cycles, suffer from PMDD, caused by an increased sensitivity to reproductive hormones during the luteal phase between ovulation and menstruation. This sensitivity leads to alterations in the brain chemicals and pathways that control mood and well-being. Symptoms include severe depression, mood swings, irritability or anxiety, and drastically increases the risk of suicidal behaviors. Appropriate diagnosis and treatment of PMDD are therefore important not only for reducing suffering but also for saving lives.

“This decision is a game changer for PMDD,” according to Sandi MacDonald, Board President of the International Association for Premenstrual Disorders (IAPMD).  “The WHO has officially classified PMDD as a true and diagnosable disorder, and differentiated it from the wide collection of premenstrual symptoms commonly known as PMS.”

Historically, PMDD has been studied and treated by both (1) nervous system (brain) experts (neuroscientists and psychiatrists) and (2) reproductive system experts (reproductive endocrinologists, obstetrician-gynecologists). This multi-specialty approach has been reinforced by PMDD’s ICD-11 cross-listing in multiple chapters; the chapter on mental, behavioral, and neurodevelopmental disorders, as well as the chapter on diseases of the genitourinary system (system of the reproductive organs and the urinary system). This will foster more effective collaboration between these specialties.

“Given that evidence-based treatment algorithms for PMDD require a broad set of clinical expertise and skills, it is becoming increasingly clear that multiple providers with different specialties are required to offer truly comprehensive care for PMDD,” according to Tory Eisenlohr-Moul, PhD, IAPMD Clinical Advisory Board Chair and Associate Director of Translational Research in Women’s Mental Health at the University of Illinois at Chicago.

“The IAPMD recommends that clinicians build collaborative, multidisciplinary treatment teams for PMDD patients in order to facilitate patient access to the full range of evidence-based treatments. It is our hope that the inclusion of PMDD in ICD-11 will facilitate greater collaboration among treatment providers of differing specialties,” added Eisenlohr-Moul.

The ICD is published by the WHO and used worldwide for morbidity and mortality statistics, reimbursement systems, and automated decision support in health care. In May 2019, member states agreed to adopt the ICD-11, to come into effect on 1 January 2022. The system is designed to promote international comparability in the collection, processing, classification, and presentation of these statistics. Like the analogous DSM (which is limited to psychiatric disorders and almost exclusive to the United States), the ICD provides a common language that allows health professionals to compare and share health information across the globe.

The International Association for Premenstrual Disorders (IAPMD) is the leading voluntary health organization which aspires to create a world where people with Premenstrual Dysphoric Disorder (PMDD) and Premenstrual Exacerbation (PME) can survive and thrive. Our mission is to inspire hope and end suffering in those affected by Premenstrual Disorders (PMDs) through peer support, education, research, and advocacy. What began as a collective of fellow suffers in 2013 has grown into a global movement accelerating the progress being made around the world.

Friday, March 29, 2019

Shine a Light on PMDD - April is PMDD Awareness Month

BOSTON, MA, March 29, 2019 -- A global awareness campaign will kick off this April to help “Shine a Light on PMDD” on a little known, debilitating and life-threatening condition that takes an average of 12 years to be correctly diagnosed. 
Premenstrual Dysphoric Disorder (PMDD) is a cyclical, hormone-based mood disorder which impacts approximately 1 in 20 women and individuals assigned female at birth (AFAB) of reproductive age - a staggering 60 million worldwide. With symptoms including severe depression, overwhelm, and anxiety appearing in the two weeks before menses, PMDD takes a toll on sufferers’ ability to work and maintain relationships with partners and family. In the 2018 Global Survey of Premenstrual Disorders, out of 1,425 patients with prospectively-confirmed PMDD: 
● 16.8% reported having lost a job due to PMDD 
● 56.7% reported having lost an intimate partner relationship due to PMDD 
● 98% and 97% feel PMDD puts a significant strain on their intimate partner relationship and family relationships, respectively 
● 42.7% reported problems with parenting due to PMDD, with 10.5% feeling completely unable to parent during PMDD 
The relentless emotional and (for some) physical pain also drastically increases the risk of suicidal behaviors. In the same survey, 30% of patients with PMDD reported that they had attempted suicide to escape their symptoms. Sadly, this number does not include those with PMDD who have died by suicide, which suggests that 30% is a low estimate for the rate of suicidal behaviors in PMDD. Appropriate identification and treatment of PMDD are therefore important not only for reducing suffering but also for saving lives. 
The same survey also showed it takes an average of twelve years and six healthcare providers to receive an accurate diagnosis of PMDD. After years of suffering, individuals with PMDD describe learning about the disorder as a ‘lightbulb moment’. 
“PMDD has been invisible for far too long,” according to Amanda LaFleur, Co-Founder & Executive Director, International Association for Premenstrual Disorders (IAPMD), the global leader of PMDD awareness and education. “It’s underdiagnosed, misdiagnosed and, at worst, the lack of understanding leads to harmful ridicule and shaming of suffers. During PMDD Awareness Month we need to create millions of life-changing lightbulb moments across the globe so people can get the support and treatment they need!” 
This year, IAPMD is again collaborating with a coalition of organizations, including U.S.-based Me v PMDD and U.K.-based Vicious Cycle: Making PMDD Visible, to ‘Shine a Light on PMDD.’ Resources to support awareness-building are available on pmddawarenessmonth.org. Website visitors can access the PMDD Awareness Month Toolkit, find facts and figures about PMDD, create a fundraiser, and share their story.
Individuals with PMDD are encouraged to add their voice to the women's reproductive and mental health movement and receive timely updates on work underway to inspire hope and end suffering in those with premenstrual disorders. 
“This is a galvanizing movement in women’s health,” according to Sandi MacDonald, IAPMD Board President. “PMDD is a perfect storm where #MeToo and #TimesUp, meets mental health awareness, meets suicide prevention. This campaign will be that ‘eureka!’ or ‘light bulb’ moment of insight, and then sufferers and activists around the world are empowered to raise awareness of PMDD and increase access to effective treatment options.” 
While PMDD is directly connected to the menstrual cycle, it is not a hormone imbalance but rather a severe neurobiological reaction to the natural rise and fall of estrogen and progesterone. Symptoms occur the week or two before menstruation and go away a few days after bleeding begins. There is no blood or saliva test to diagnose PMDD, but these tests can rule out other underlying disorders. Diagnosis is done by tracking symptoms for at least two menstrual cycles. As noted above, women and AFAB individuals with PMDD are at an increased risk for suicidal behavior. Although PMDD has been included in the Diagnostic and Statistical Manual of Mental Disorders (DSM) and International Classification of Diseases (ICD) for years, it continues to be disregarded or misunderstood by doctors and the general public.
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Organizational Contacts: 
Amanda LaFleur
Co-Founder & Executive Director, IAPMD 
1-800-609-PMDD (7633) 

Laura Murphy
Project Co-Founder/Director, Vicious Cycle
Twitter: @viciouscyclepmd 
+44 7739 342590 

Sheila H. Buchert Co-Founder & COO, Me v PMDD, Inc. 

Sunday, August 26, 2018

PMDD and Self-Awareness - What Has Your PMDD Taught You?

Today's post is an insightful guest post that describes a journey of self-awareness.  I have long said that self-awareness (and then self-acceptance) is the key to mastering your PMDD. You know yourself better than anyone else does.  Take the time to get to know you, and learn to be your own best friend. Not a moment of that will be wasted, because doing so will bring you many steps closer to wellness.  Get to know who you are on good days and bad days.  Learn to love and accept all of you.  For me, personally, the results were life changing.  I learned to focus on my strengths, and, on days when I could not be anything resembling strong, to focus on my needs. My guest today shares the difference it has made in her life, and in the comments we both hope you will share what you have learned about yourself through your PMDD.

Ladies here is what I have learned about my PMDD, or what PMDD means for me:

1) Low tolerance for fake and false people.
2) Hate lies and lying.
3) Low tolerance for people pleasers.
4) We are super intuitive and creative (could be blocked).
5) Don’t push me or have me multi-task above the pressure I put on myself.
One thing I am grateful for is PMDD has allowed me to get to know all of me, the good, the bad, the ugly. Yes, I am super loving and passionate and I can get super irritated and angry as well especially if I feel sarcasm, slimy, abusive, inauthentic, people pleasing, shifty behavior.  Also, to the ‘super smiley-my life- is-perfect people’ - I don’t buy it one single bit.
I am glad that I know my rage, I know her well.
I know my grief, I get down on my knees and weep.
I know my sexy bad ass, she can be sensual AF.
I don’t want to be around fake people or people pleasers, I will have to mirror that bullshit.
I am not interested in small talk.
I am an extrovert but my introvert demands a lot of alone time and I love her for that!
I need to create and often. If I don’t I get cranky.
I need alone time. If I don’t I become a bitch on wheels.
BOUNDARIES are super important.
Successful relationships are ones that are mutually beneficial and fair. I have stepped away from all the ones where I was giving more.
I follow my turn on. I don’t bother if I am not turned on by a place, a person, an event, a function. If I do go I will just become cranky.
My anger and my bitch are there to protect me to remind me to get back into my body and out of my head. To tell me when I have self-abandoned me in order to please someone else or self-sabotaged me away from my dreams.
Next time I will be kinder to me and not leave me again.
No means NO and does not convert to yes the more you whine or beg. With my kids: I am your mom, I won’t always be popular. Suck it up.
On any request: I will tune into my body and ask Do I want to do that now with this person? (It's okay to say maybe another day).
I need variety. People and places. Sameness bores me.
Nature turns me ON. It’s not a luxury but a necessity!
My body needs to move! OFTEN.
Music makes me FEEL good!!!
I would love to hear what you have learned about yourself on your PMDD journey.

Sunday, May 13, 2018

PMDD and Your Brain

A while ago, I read the book Women’s Moods: What Every Woman Must Know about Hormones, the Brain, and Emotional Health. It was a great book about overall hormonal health and described how hormonal issues are physiological occurrences in the brain that manifest as emotional behavior, because the hormones involved affect the areas of the brain that regulate our emotions.

On the one hand, I wished I’d read this book years earlier than I did, as it was first published in 1999. On the other, I’m glad I didn’t. While the authors completely explain the devastating effects women's hormones can have on your emotional life, they are firmly in the camp of using medication to treat these brain disorders that affect women throughout our reproductive years.

That’s fine if you want to go that route, but there are other options available now to women who suffer from hormonal issues. In 1999, these options were given a cursory mention and dismissed. Which means if I’d read the book any earlier than I did, I would have come to the conclusion that there was no alternative to my PMDD, short of medication.

That, for me, would have been very depressing indeed.

I know there are millions of women out there who have severe hormonal issues that may well require medication to control them—notice I say control them—not manage them. Me, I manage my symptoms through nutrition and exercise and positive lifestyle choices. If I took medication I wouldn’t need to be so vigilant about my health—the medication would theoretically handle the problem for me. But in my case, with the PMDD, I can’t see taking medication every day for something that only occurs a few days a month.

Still, there are days when the thought of it tempts me. But most days it does not.

As I said, to have read this book any earlier would have been devastating for me. Because the authors insist over and over that without treatment, your hormonal issues will only get worse. That there is no light at the end of the tunnel without treatment—this is absolutely true--but their treatment of choice is not mine.

That aside, I was able to read the book and learn much about the causes of hormonal issues and how and why these issues can and do get worse later in life without some type of intervention.

Hormonal issues are a very serious and practically rampant problem for women. Yet some days it seems like the only people paying any attention to us are those who can profit from our condition(s). Most of the information women receive regarding "hormonal imbalances" (a term I take exception to) comes from companies whose drugs have been approved for treatment of these "imbalances."

We need more than to be told a certain medication (or two, or three) can solve  our problems. We need to understand the underlying causes of our hormonal issues and find ways to heal ourselves from within and prevent the need for chemical solutions. We need to understand the unique female brain/body connection and how it makes us vulnerable to mood problems at the most challenging times in our lives. Puberty, pregnancy, post-partum, peri-menopause, menopause, and post menopause.

Every time you have a child, your hormones undergo an enormous amount of stress, and yet society acts as if there’s nothing to it. Life goes on and you cope.

But what happens when your ability to cope fails you? What happens when, as these authors aptly describe it, you have an internal “earthquake” and mood disorders erupt?

All this attention is given to heart health, but brain health is equally important. We need to learn to care for our brain as diligently as we do our heart. Not only the heart can be compromised by a woman’s genetic make up, life experiences, and stress load, but so can the brain.

If our brain doesn’t work right, we don’t work right, and all sorts of life-chaos can happen. No amount of "being strong" or "powering through" is going to re-regulate a brain that has gone askew. It just isn’t going to happen.

The way this book and many others describe it, our brains have neurological pathways that become worn over time like ruts in a road. When any situation arises, our brains immediately locate the memory of how we dealt with that situation in the past, so that we can effectively do so again. And each time we deal with that situation again, a new pathway is created over the old pathway.

This works fine if your brain is healthy, or operating at optimum level. But what if your brain is not? Then your brain is creating new pathways over damaged roads, and only more damage ensues.

Genetics plays a factor in this, of course, but so do your thought processes. In short, how we deal with stress affects our hormones, which in turn affects our brain. This stress can come from any and all sources, trauma from an accident or abuse, be it physical, emotional, sexual, mental, spiritual, financial, you name it, or from naturally occurring life events such as birth, death, marriage, divorce, loss of a job or health or relationship, to name just a few.

When your hormones are doing what they should, your body deals with these stresses in a normal and healthy way. When your hormones are compromised, your body and brain do not. Little stresses can be magnified into big stresses, completely out of proportion to the situation. When your hormones are compromised and your brain is dysregulated, you can feel like you are under attack 24/7. Your brain makes no distinction between the threat of an oncoming car or someone who simply disagrees with your point of view. Both, to your dysregulated brain, are threats to your very existence.

It’s not logical, in fact it is completely irrational, but that’s what it is. Your dysregulated brain is not properly processing the threat.

This is why women with mood disorders like PMDD or even simple hormonal fluctuations seem so irrational at times.

But we’re not crazy, or imbalanced--far from it. Rather, something has compromised our hormonal system, something that has yet to be scientifically identified and verified, something we have no more control over than we do an allergic reaction.

This is not to say there is nothing we can do to prevent our hormonal eruptions.  We all know that once one begins, it is unstoppable, because the PMDD brain is out to win at all costs.  But there are ways to minimize our eruptions, and this blog* is full of tips for that.  If you're looking for the information all in one place, try my book, PMDD and Relationships, or, for the supportive partner, PMDD: A Handbook for Partners.   Both are based on the posts in this blog.

*Use the search box at the top of the page to locate topics you are interested in reading more about.  Type in the subject, and if I have written anything about it, a list of posts will appear.  This will save you a lot of time spent scrolling past stuff you're not interested in.