Wednesday, February 8, 2017
How do I survive? If I'm doing all of this, what am I doing for me? Well, it's taken a long time but, I've accepted the fact that it's not about me. It's not even about her. It's about the boys. If she's in a state, I trust her to handle it. I deal with the dudes.
WHAT ABOUT ME?
Don't get me wrong. I do things for me. I'm not talking about drinking or smoking or drugs (though my alcohol intake does increase on those PMDD days). For me, it's cooking. Something that has a beginning, middle, end. Something that involves the boys (so they don't bug mommy on the couch or in bed). Something that satisfies us. Something that's controllable by me. Something that's as challenging as I want to make it. Something that allows me to express myself to others. I can immerse myself in the process, pushing the stresses of the day to the side (at least temporarily).
Recently, I've been writing. I write how I'm feeling when she ups and leaves the dinner table or lashes out at me or tries to pick a fight just because she wants to argue. I keep track of the number of days she sleeps downstairs, while I deal with the boys through the night. I write lists (bucket, shopping, chores). I write quotes or words of wisdom and inspiration (to remind myself that I'm not alone...though it often feels like I am.)
My big one, though, is music. No, I don't write it or sing it or perform it. I listen to it. I have my 'mood music' to centre me. And, like her needs during her PMDD spells, what I need varies each time. It could be punk or rap or chillout or metal or classic rock or country...but when it's on, I'm in the zone, in the moment and in the mood. When I'm cooking, there's ALWAYS music on. Again, it shifts with my moods.
I'll say it: PMDD can be a selfish disorder if your partner blames every given frustration or moodiness or anxieties on it. And, trust me, it can go there. She will do what she needs to do for her when she needs to do it. Regardless of your intentions, there's very little you can do. She's been dealing with it, coping with it, handling it well before you entered the picture. She's dealt with it on her own and will continue to do so...ON HER OWN. Get over it. Seriously.
WHAT CAN YOU DO?
For the love of humanity, when she says to leave her alone, LEAVE HER ALONE.
When you're trying to decide what to make for supper, avoid at all costs, asking question after question after question. Stick to one simple question with a yes or no answer. Most likely, she won't eat any food anyway so it doesn't matter what you make!
Please ask her, once, "is there anything you need" or "can I get you anything" or "is there anything I can do?" - but do NOT ask every few minutes.
Be prepared. It's the scout's motto. It's important here, too. Have her comfort foods on hand: perhaps it's a particular chocolate bar (Lindt dark chocolate with hot peppers for my wife) or salty snacks (chips? nachos?) - don't be surprised if they disappear during her moments of deep darkness. Even if you wanted some, you can buy more. Again, this can lead down the road of selfishness but get over it.
This is a disorder requiring frequent, unexpected sacrifice. You're going to need to give up stuff - she may need your attention...ooooooooorrrrrrrr....she may tell you to 'get the f--- out' meaning you need to find somewhere else to be (pub? friend's place? ANYWHERE but home). The nice thing is that, if she's coming out of her state, she'll text you to come home. When you do go home, say very little. Maybe a 'how are you feeling?' but don't you dare overwhelm her with story after story about what you saw, did, or heard. It's not - and never will be - about you during these times.
One more thing. YOU. CAN'T. FIX. HER. Don't try. Don't tell her to 'go for a walk' or ask to go out for dinner or sex. Don't even consider telling her to 'get over it' or 'snap out of it' or tell her that it's nothing. It's everything. It's all consuming and all encompassing. It is a deep, dark hole that she's allowed herself to explore and it's scary as fu--. She doesn't want you down there with her. This is her own hell. You cannot and will not be her tour guide. Trust me. I've had my nuts in a sling one too many times thinking I could be the fixer...like I could be the solution to her problems. It sucks to not be able to solve a problem for her. I love my wife, but not having the tools to fix her hurts like hell. She's stronger than words can express...and it'll make you stronger the moment you accept the fact that you are not her knight in shining armor, rescuing her from a pit of despair.
So what are the solutions? There aren't any. Every month may be a different hell. Every time it rears its ugly head, it may be a different stimulus that exacerbates her anxiety. You can usually predict when the darkness may arise but be prepared for spontaneous combustion.
There are medications (my wife's on Cipralex). Does it help? Yes. Is it a cure? No. Her PMDD still comes...but not as frequently. We're down to ~8-10 days a month now. It lowers sex drive. Decreases appetite (with sporadic bouts of gorging). Ironically, it CAN increase anxiety (!) which, I thought, it was supposed to minimize...but, whatever.
There's therapy. I'm sure there is. We just haven't explored it. Yet.
There's exercise or yoga...something that centers the mind and body. But, dear man, don't suggest she work out while she's in the middle of an episode. You're likely to have a rolled up exercise mat shoved deep inside you through a very tiny orifice.
Why don't I go out more? Because I never know when the PMDD will kick in or when the depression or anxiety will hit. I never know, going to get groceries, if I'll come home to find her on the floor. I fear leaving her with the boys on 'bad' days because I never know what to expect when I come home - will they be trying to wake her up? will she be locked in her bedroom, sobbing? will she be unleashing her fury on the boys as they wildly chase each other through the house? It's the fear of the unknown.
Don't be surprised if you slip into your own funk after a particular bout of PMDD. It's draining. It's exhausting. You'll be physically, mentally and emotionally wiped. You'll be worrying about her, questioning yourself, wishing you could do more (once you've accepted you can't), wondering if she's ok...it's a whirlwind that is uncontrollable. It keeps you on edge. She may have said something particularly hurtful or mean (just to get you going). That sucks big time. Then, when the dark clouds pass, when she's all kinds of relieved and 'nice again', you may be relieved...but you'll be mentally overwhelmed. You'll want to talk to her...and, perhaps, she'll want to share her thoughts (what you did right, what you did wrong) and that, in itself, further drains you. You don't want to hear all the things you did wrong (or didn't do at all) do you?
It sounds mean or cruel or insensitive but, guys, suck it up. Man up and accept that your wife or partner or lover has PMDD. The more you learn about her & how she handles it the better off your relationship will be. It is an ongoing process, kind of like the Hobbits on their quest for the ring. It's an adventure but one fraught with chaos, insanity, danger and doubt.
What can you do? What can you say? It's easier said than done.
When she's not in a PMDD state, (and, please, don't inundate her with all of these questions at one time!)
~Ask her what you can have on hand for her (salty? sweet? Sex & the City box set?)
~Ask what you can do to help (tell her to be specific in what she wants from you - rub her lower back, check in without saying a word, hand her a cup of tea and walk out, etc)
~Ask her what, specifically, she needs from you (a conversation afterwards? a walk? etc)
~If you think medication is needed, tread carefully - choosing a safe time to mention intervention is paramount.
If asking her to seek treatment is tricky, wait until you mention 'therapy'...that's another whole kettle of fish.
There's more, I'm sure...but if you have any questions, comments, ideas, suggestions, tips or stories to share, please do so...though it may feel like you're alone, know you're not...the fact you're exploring how you can help your partner demonstrates your strength and resolve.
The above is a guest post in two parts by Chef Jay, who has decided to help raise PMDD awareness by starting a blog for men about PMDD. You can find his original post, and others, here.
Monday, February 6, 2017
What follows is a guest post in two parts by Chef Jay, who has decided to help raise PMDD awareness by starting a blog for men about PMDD. You can find his original post, and others, here.
Why am I writing this dissertation on PMDD? Simple. I need to. There aren't many resources out there for guys. There isn't a strong support system - the number of comments I've seen by guys saying "run away" or "get the F out of the relationship" or "she's crazy" are overwhelming, insulting and, at the very least, a disappointing commentary on the state of men.
Living with a wife with PMDD (who's had it most of her life) and growing up with a sister who, looking back, had something along the same lines, I can say the following: It's worse that what's described. Does it need to be said that PMDD is NOT PMS? Duh.
"...symptoms begin 7 to 10 days" - not always. It can hit at a moment's notice. The anxieties can skyrocket in a heartbeat. The moodiness can take over without warning...a sound, a question, proximity to other humans...anything. One moment, she's sitting at the dining room table, the next, she's heading to the basement to burrow into pillows and blankets, watching Downton Abbey (or whichever show makes her feel better).
If your partner, wife, girlfriend, significant other is anything like my wife (who, according to her doctor, is a textbook case for PMDD), hopefully my words might help, enlighten or support you in your relationship. It's not easy. I feel for you. Really. It's hard as hell. You can do this.
Let me say this first (and I'll say it a couple more times before this is through):
YOU ARE NOT ALONE.
Family is key. Hers, Yours...they need to understand what you're going through, why she couldn't make it to Thanksgiving supper or church or your nephew's recital. She probably doesn't want to be around people. Including you. Your life must continue.
But here's the tough part: she will take it out on you. Why? Because she loves you. If she's letting loose her irritations, her tirades, her anger, her frustrations upon you, it means she trusts you. She's let you behind the curtain. But what sucks is that you will be yelled at, loathed, be the focal point of her ire. And, most likely, she won't want to talk about it. She won't want to dwell on it. Once its passed, she's done with it, not wanting to recall the dark place she endured. Why? Because it's over...and, most likely, she won't want to consider how her words or actions (which she may or may not remember expressing) affect you or those around her. It makes matters worse. Or, at least, that's what I've learned. Often, picking fights is an outlet for the tension in her mind and body. My wife says it's because she loves me. It's hard as hell, but don't give into the temptation to engage in an argument when she's PMDD-y. Walk away. Seriously. She will, likely, say things to get you going, get under your skin or piss you off. Walk away. She's only doing it to drag you down. It'll make things so much worse because, likely, she won't recall engaging you in a volatile discussion and you will. And, if you're like me, you'll hold it against her. Remember, dysphoria is 'a state of unease or generalized dissatisfaction with life' - compounded with her anxiety, depression, restlessness, agitation and irritation...it's like a tornado within her body and her words are letting some of the destructive forces out, wrecking you in the process. The tornado knows not what it destroys. Walk away.
Here's the best way my wife described it: She's in a deep, dark hole. There's only one way out and, to get there, she has to go through the darkness. She said, 'when I come out, into the light, it helps if you're there waiting for me...it makes things easier.' - that, for her, for our family, I can do.
We have 2 kids. They're realising (at the ages of 4 & 6) that "mommy doesn't feel very good" rather often. Until medication entered our house, her PMDD symptoms were, on average, 16 out of 30 days. Things are getting better...the boys are well versed in the "don't wake mommy" talk...or "mommy's very tired today" chat...my 4 y/o will come into our bedroom to sleep with me when mommy stays downstairs. As he puts it "I'll sleep with you, daddy, so you don't get sad".
One thing that's not often identified when discussing symptoms of PMDD is suicidal fantasies. I learned, quickly, that the fantasies are VERY different from tendencies. I was told, "hide the pain pills away from me because that's the way I'd probably do it...less mess for you to clean up". WTF? Nobody prepares you for that mindset.
So...What do I do? How do I cope? What keeps me grounded? Why do I stay in a relationship that, clearly, is emotionally volatile?
First off, the boys. Dude & Lil Dude. I'm there for them. I take them away, keep them occupied, keep them entertained, keep them busy...but I also get their meals, make their lunches, do their laundry, bathe them and put them to bed...and I wake them up, make them breakfast, get them ready for school...it's not an equal division of labor, I know...but it's what needs to be done.
Why do I do all that? Why do I also do the groceries and the laundry and make suppers? Simple. I don't know if it's going to be one of THOSE days. I made a promise to myself that I'd do what I could to start the day off positively and easily for her. I anticipate the worst (it's gotten to the point where I have a 50/50 chance of being right). I try and do everything I can so her anxiety is lessened. I can't get rid of it...but I can lower it. She calls me a martyr. So be it. I'd rather do that than be one of the guys who, at the first sign of adversity, turns tail and runs.
Next Up: PMDD - From One Man to Another, Part 2 - How do I survive?
Tuesday, January 24, 2017
Today's guest post welcomes author Eryn Speers' unvarnished reaction to the news that National Institutes of Health (NIH) researchers have discovered molecular mechanisms that may underlie a woman’s susceptibility to disabling irritability, sadness, and anxiety in the days leading up to her menstrual period. I couldn't have said it better myself, which is why I asked permission to reprint Eryn's original Facebook post here.
The bottom line is this NIH discovery is good news for us all. Please be sure to watch the five minute video (link provided) at the end.
I have been through the gambit, had my moments of doubt, and a few good months where I thought I was "free" of PMDD. Chalking it up to stress, or difficult times, only to have it return with a vengeance. In my frustration I began my research again, shaking my head every time I ended up down the same road: eat clean, eliminate sugar and caffeine, get your hormone levels checked, get acupuncture, see a naturopath, try anti-depressants and Cognitive Behavior Theory. The list goes on and on, as we know. What I, myself, have come to realize, is that all this conflicting information just makes it all worse. That's why I am taking this new research as a cue to stop blaming myself, and to stop listening to all the noise and babble about what the "correct" treatment of PMDD is. While it's a good idea for anyone to reduce sugar intake, exercise regularly, and investigate possible food sensitivities - these things will make anyone feel better in general, but to continue to go in circles just adds stress to what is already a stressful situation.
I hope this new research helps others to do the same. Yes, it means we still suffer until they find a way to use the info to come up with a therapy that targets the actual cause of the problem, as opposed to the symptoms. However, at least those of us who are desperate and tired of trying everything to no avail, can try to find some hope in knowing that they are really working on it.
This is a disorder on a cellular level, and I am ready to accept whatever treatments they come up with in order to get my life back. My hope is that those of you who are very anti-pharma will try to trust, for a while, and give yourself a break from feeling that the only one who can correct the problem is you.
This puts so much undo pressure on us, and also nurtures an environment of pessimism and fear. We deserve to feel better! This problem is not caused by us. This is not a matter of poor diet or lifestyle choices, or a hormonal imbalance. All we can do right now is cope as best we can, and we're all doing that.
We're here to support one another, and I feel that we should all encourage one another to stay open to the possibilities as the research advances. Please, I implore you to keep trying new therapies until you are finally free of this awful disease. If you want to take anti-depressants in the meantime because they help, great! If you want to take birth control, or stay 100% natural in your efforts to get through and lessen the severity of your symptoms - also great!
However, please don't let the way this disease makes you feel hopeless and useless allow others to tell you exactly how to approach your own health. Don't let the fear and skepticism of others stop you from trying a drug that has been specifically developed to treat this issue in the future. They ARE working on it.
Have faith! ~ES
Sunday, January 15, 2017
Today's gift is a post by PMDD Advocate Danielle Lasher Bosley, which helps to explain the mysterious MTHFR gene we have often read about.
What is MTHFR? It's an enzyme that can be mutated. Women with PMDD don't all have the mutation, but it is assumed the vast majority of us do. If I had to personally estimate based on women I know who have been tested already, I would say above 90%.
MTHFR is highly linked to mood disorders, autoimmune issues, and many, MANY other things. Heart disease, PCOS, cancer, thyroid issues, addiction, miscarriage, fibromyalgia, IBS, bipolar, chronic fatigue syndrome, asthma, MS, cervical dysplasia and much, much more...
People with the MTHFR mutation cannot properly methylate. When methylation is impaired, they can't detox properly, among other things. Birth control, any synthetic hormones, prescription drugs overall are riskier for us. They essentially get us further away from being better while making us feel better temporarily.
People with MTHFR should NEVER use acetaminophen (stick with bioron or ibuprofen if needed). We also should not be vaccinated. Many of us in the PMDD community who have researched this illness for many years and have also researched vaccines are confident there are potential links and that for some of us, vaccines contributed to or outright caused the start of this illness.
The two most common forms of MTHFR we know of are c677t and a1298c. Heterozygous MTHFR means you have one copy of one of these. That is the least serious form, but it still predisposes the individual to more risks than someone without MTHFR. Compound heterozygous means you have one copy of each form. This is more severe than the first form I mentioned. The most serious form of MTHFR is homozygous. Homozygous c677t is the worst one. This means you have two copies of the 677 form. Methylation is decreased to an estimated rate of just 30% of what the body should be doing in these cases.
People affected by the MTHFR mutation need methyl folate. They also need to avoid folic acid. Folic acid is the synthetic form of folate (Liana adds: and is promoted heavily by the media to all women of childbearing age.) With MTHFR mutations, only methyl folate can be received and processed by the body. Synthetic folic acid actually builds up on receptors and blocks natural methyl folate from getting through. This makes us sicker.
Keep in mind this goes beyond vitamins. Folic acid is added to a TON of processed foods. Breads, cakes, potato chips, etc... This is part of the reason we improve when we cut out these foods. You might have heard women speak about their PMDD improving when they go Paleo, etc.... It's not merely because they cut out processed food. It's because in that step, they removed the folic acid from their diet and started consuming methyl folate. Their body is finally able to start working properly and detoxing well.
Vitamin B is also important and majorly impacts our moods. We must avoid cyanocobalamin and only use methylcobalamin. (Liana adds: Read the label on your bottle.)
Synthetic hormones and birth control are not only a risk for us because we have higher risks of heart issues, stroke, and pulmonary embolism, but because the synthetic hormones reduce folate! The hormone part makes you feel better today, but the damage its doing underneath the surface will make this illness, as a whole, harder to treat.
We are also at high risk of vaccine injury. Many of us are confident PMDD may be the result of vaccine injury itself. If you've never researched vaccines, they do indeed cause injuries. Many of them are brain injuries and issues that have led to the development of neurological disorders. As of this date, $3 billion has been paid out to victims of vaccine injuries through the federal vaccine court. The numbers continue to grow.
Vaccines are dangerous for us because they contain adjuvants we can't properly detox from when we have either the MTHFR and/or COMT* gene. MTHFR also inhibits our bodies from removing the toxins that vaccines inject. Just some vaccine ingredients include:
Formaldehyde, aluminum, mercury, aborted fetal cells, cow and monkey DNA, glycophosphate, polysorbate 80 (carcinogenic preservative), neurotoxins like ammonium sulfate, antibiotics (more harm to our guts), phenoxyethanol (antifreeze), and more.
Hope you're all hanging in. We ARE going to resolve this illness. ~Danielle
*Catechol-O-methyltransferase (COMT) is one of several enzymes that degrade catecholamines (such as dopamine, epinephrine, and norepinephrine), catecholestrogens, and various drugs and substances having a catechol structure. In humans, catechol-O-methyltransferase protein is encoded by the COMT gene.
Sunday, December 11, 2016
Sometimes when we’re on the edge, a little dose of truth is all we need to keep from toppling over. Here are 5 secrets that can make surviving PMDD a lot easier.
1. Resistance creates suffering. Yes, PMDD causes unbelievable discomfort and mental agony. But were you aware that when you resist that discomfort and agony, you are actually creating MORE of the same? The human race is quite masterful at wanting things to be different. We’ve gotten quite adept at overanalyzing, strategizing, manipulating, denying, oppressing, and yes, even brooding over what is. But what is, still is. With or without all the energy we expend pushing things away, blaming ourselves or others, and replaying events of the past or imagining disasters in our future, reality is still reality. The trick, and I tell you true, is to use that very same energy you’ve been wasting on what you cannot change and divert it into new channels that actually make you feel better. It’s so flippin’ simple and obvious, and yet doing it takes tremendous energy and refocus.
2. Build your energy. Okay, so now you know. You’ve got to spend the energy you have differently and also increase your energy enough to be able to break out of old habits. So, you have to identify all the ways you waste or leak energy. It could be through crappy relationships, through poor diet, not getting enough sleep, and the less obvious ways of stuffing emotions, harboring negative thoughts, or denying yourself as a matter of habit everything you truly want in life (by, for example, not even asking for it!). And here’s another tip: the more comfortable you can become with your discomfort, the more energy you will reserve and build. When you want to flee or fight, but there’s no imminent threat, stop. Feel. Breathe, woman! I promise it will pass.
3. You don’t need to fix yourself. I know. It’s hard to believe. But it is true. You don’t NEED to be any different than you are…no matter what you or anyone else has been telling you. I know PMDD sucks. I know it can turn you from sweet and loving to bitter and hateful in under 3 seconds. But the thing is, neither of those personalities is you. You are a deep and beautiful mystery created by Life, infused by life, and guided by life. Flawless! Next time you get the message that you suck, duck! Let that bullshit ride the airwaves right over your head and out the window. There’s nothing you can do to change what is until Life decides it’s time. And then all you have to do is not resist! So until then, dream a better life but without the underlying judgment that says, “I am not doing enough.”
4. Let yourself off the hook. The nature of PMDD ensures you’re going to have bad days. Why beat yourself up about them? Why bash yourself with judgments and shame or guilt over what you thought or felt or did? Make reparations if you can, of course. But it is actually a complete waste of energy to chastise yourself for losing your temper or getting depressed again. It is useless to tell yourself to get a grip or get over it. And you certainly wouldn’t appreciate hearing that from someone else, so why do it to yourself? Accept that in every moment, you unquestionably do the best you can. If you could do any better, you would. Allow yourself your mistakes, forgetfulness, reactions… Whatever thoughts or feelings or emotions you experience, they really aren’t personal. They pass and evaporate, eventually. They aren’t YOU.
5. Stop believing your complaints. PMDD causes sufficient misery to provoke numerous complaints. You’ve earned the right to complain. So if you need to vent, vent! It’s healthy! But that doesn’t mean you have to believe your complaints or use other people like sponges to absorb all of your problems. Whatever you need to express, do it with people who aren’t going to buy into and reinforce the story. But take care you don’t reach out to people who are going to devalue your experience either. What you feel is real. What you believe about it…not so much. It is a delicate balance, and it starts with you. Recognize that sensations arise in consciousness. You will never be able to control them, so don’t waste that precious energy trying so hard. Instead, learn to doubt them. Learn to see them for what they are. You’re not broken, doomed, hopeless, or useless and life hasn’t handed you an impenetrable bum deal. The truth is, life is so much easier than we make it…if we’re willing to let it be.
Liana's note: The above guest post was written by the blogger Cheekyminx. With her permission, several of her posts about PMDD are being featured on this blog. To find out more about her work as a PMDD Advocate, please visit her Facebook page, PMDD Life Support.
Sharing the Sisterly Love - A Report From the 2nd Annual National Association for PMDD Conference in Philadelphia
The 2nd annual National Association forPre-Menstrual Dysphoric Disorder (NAPMDD) conference was like no other, ever, anywhere. Since continuing medical education credits were offered this year, they had a wide array of medical professionals present, both at the podium and among the attendees—all of them discussing Premenstrual Dysphoric Disorder, a disorder that affects women around the world with life-altering symptoms that revolve around their menstrual cycles. Clinicians from all fields of PMDD treatment shared what they knew, what they believed, what they had discovered, what could be proven, and what worked for their patients.
For a research geek like me, it was sheer heaven. Nowhere else on earth would I find one location with so many dimensions of medical care for PMDD represented—and openly exchanging ideas, some of them rather heatedly. But to witness a public forum of medical professionals discussing the disorder I have suffered from for over forty years was a dream come true.
My deepest gratitude and admiration goes out to NAPMDD Executive Director Amanda LaFleur and her tireless board of women determined and dedicated to doing all they can to promote awareness and open discussion of a disorder we have suffered from in silence, confusion and neglect for more than the 70 years since it was discovered. In Philadelphia, on the 51st floor of a building overlooking the beautiful City of Brotherly Love, psychologists, psychiatrists, social workers, endocrinologists, gynecologists, medical researchers, reproductive hormone specialists and other PMDD advocates gathered. Several speakers commented that they’d only seen PMDD from their specialty’s perspective until this conference, and they appreciated the opportunity to hear other points of view, as it brought up ideas they had never before considered, and made their PMDD picture more complete.
Surprisingly enough, one thing everyone in the room during a particularly dynamic discussion of treatment options agreed on—the name needs to be changed and the designation of ‘dysphoric’ dropped, to remove PMDD from the realm of mental illness. PMDD is a biological disorder, not a mental one, and needs to be treated as such, and not with the current cache of psychotropic drugs designed to alter the mind.
That was my major takeaway from the conference. No, you are not crazy. That alone made it worth the price of admission.
I also attended last year’s NAPMDD conference in Denver. I would say the major takeaway from that conference was: You are not alone. Between the two conferences, I now have something I didn’t have the first forty years of my life with PMDD: Hope—if not for a cure in my lifetime, then at least for a reliable answer as to what causes PMDD and the best way to treat it. Nearly everyone I heard speaking on the subject, with only one notable exception, said antidepressants and/or birth control were not the answer for treating PMDD, but merely band-aids used to mask the symptoms, which can (and do) rebound worse than ever when this faux treatment stops.
But take heart. Caring professionals are out there studying PMDD diligently. Others want to learn all they can about PMDD, to be able to treat their patients correctly and with compassion. This is progress like my generation merely dreamed of. I am truly energized with hope for the growing number of women still in their childbearing years, struggling with this debilitating disorder. Now, thanks to NAPMDD, there’s a chance you won’t have to suffer like so many women who have come before you, shuttling from doctor to doctor to doctor, being misdiagnosed and mistreated, being told “It’s all in your head” or having your concerns completely dismissed because the doctor had no clue what you were talking about. Not to mention being used as a human guinea pig for countless medications we now know don’t work for PMDD, because while they may aid in suppressing some symptoms, they do not address the root biological cause of what is happening to you.
The second part of the conference was all about support and social networking. Last year, I think we were all simply relieved to meet “other people like us.” This year, we had many return attendees. Instead of anxious, relieved and emotional women dominating the conference landscape like last year, this year we had a strong squad of empowered women who returned to speak about their successes (and failures) in managing their PMDD, and to provide support and resources to those attending for the first time. Many new attendees brought mothers, sisters, friends or partners for support, and it was beautiful to see. The atmosphere was just as warm and welcoming as last year, if not more so. The Gia Allemand Foundation Reception Friday night was open to the public, and provided a fantastic opportunity to meet and mingle with both attendees and speakers.
At the reception I had a fangirl moment when a PMDD researcher I’ve admired for years sat at our table and I told her, “I have a special binder full of all of your studies.” In exchange, she told us how she got into PMDD research and how inspired she is by the increasing awareness of PMDD in the medical community. Other highlights of the weekend include a tour of Philadelphia on a double-decker bus with ten other conference participants, exchanging ideas over breakfast with fellow speakers and drinks and snacks at the Tap House with Executive Director Amanda and our wonderful videography team at BKN Creative. I returned home with friendships I know will last a lifetime.
So the conference is not just about exciting news and taking notes. It’s also about having fun with friends and creating a network of support and resources you can count on during the hard times.
If you missed the conference this year, join NAPMDD to stay in the know, which will provide you with access to the videotaped presentations of both the first and second national conferences, to discover this information for yourself. The cost is $36 and well worth the price of admission. There is also a free membership, but that does not provide access to the videotapes; you’d have to buy them separately.
Knowledge is power, and knowing all of your options can empower you to seek proper treatment for your PMDD, and to stand up for yourself when you meet a medical professional that refuses to believe or work with you to find the individual solution that works best for you. With the information from these videos, you have the tools you need to be your own best advocate.For more information on NAPMDD and how to attend their next conference, go to NAPMDD.org.
Saturday, October 29, 2016
Today's powerful guest post was written by Amanda Van Slyke, Founder and Editor-in-Chief of Flurt Magazine. For more information, please visit Flurt's Facebook Page.
Every month around this time the darkness swallows me up. It seems to happen in an instant, where I previously felt more creative and fulfilled than I've felt in a long time. Just before the lights go out, I climb mountains of work that I've been trying to reach for weeks. I write essays full of passion and reach out to others for emotional connection. I walk down the street smiling ear to ear, thinking that maybe – hopefully, this time – I've escaped the torture I see others endure online. They post about how they can't do this anymore – about how it happens every month, and every month like clockwork it's the same thing – feelings of hopelessness, loneliness and isolation. But I am happy. I eat well and do yoga and meditate and run – everything you're supposed to do to get rid of the darkness. I think that if only people did what I did, they'd feel just as great as I do. I am the exception to the rule.
When I was younger, I came to a point where I'd felt like I had already died. I was a shell of a person, barely leaving my bed because of the fatigue and depression, stuffing my face with whatever temporarily took away the pain. I barely escaped to the west coast to get away from the darkness before it swallowed me whole – and I saw a lifestyle that could make me feel better. I stopped drinking, stopped eating sugar and dairy and gluten – and I know how you all feel about gluten, but it worked. For the first time in my life, my face cleared up. My bloated belly flattened. When I filled my body with fuel instead of poison, my energy started to come back. My depression started to lift. I could feel the oxygen coming back into my bloodstream. The more I took care of my body, the more I saw God through me – and I was an atheist.
I know that sometimes people take medication – SSRIs mixed with therapeutic conversation – and believe me, I've been on so many pills I considered swallowing them all at once. But pills took away something far deeper than the darkness – they took away my ability to feel your toes tingle and your whole body remember what spirituality feels like. And for me, I'm not willing to give up my God – the one that speaks to me through my own moans and screams. To me, feeling that numbness inside me might as well as be the death of me. So I tapered off my medication – well, after I tried to go cold turkey, and my boyfriend almost broke up with me. When I finally felt I was myself again – the one I had been searching for and didn't know could exist – I wanted everyone to know about the revolution.
And the revolution came in a plant based crusade. I felt like I had finally found a cure for the darkness. I went two years without eating meat, and I was so skinny my panties fell to the floor. But I still said that I was part of the movement. I shared photos of my recipes online, and talked about how well I was doing. But away from the limelight my diet fluctuated just as much as much as my mood. Just like I'd tapered off my medication, I tapered off fuel for my body, replacing it with poison – processed foods that were easy, thinking that just a little bit of junk food would make the pain go away. Because the pain never did, regardless of what I was eating. If I gave in and reached for the poison, it would spread throughout my body and the pain would inflate my belly and the lights would go out. And then I would say, "Screw it," like the people online that I thought just needed to be more like me.
I know now the darkness is inevitable. I know I need to do my best to choose the light – and that I won't choose it every day, nor will anyone else – even the gurus on Instagram who post photos of food I don't have the money to make. Because the darkness isn't a place where you only go when you're weak. Diet and exercise and medication is for the privileged – and I'm privileged enough – but sometimes I don't have much money for food or the will to leave my apartment, so I reach for something I know will be easy but harder in the long run. And then I spiral down – feeling hopeless, lonely, and isolated – where my only friend is the poison that I know will kill me. Because people die from this.
The darkness leaves you feeling like there's a hole where your heart should be – where you try to fill it with things to make the pain subside. Junk food, alcohol, sex, and drugs. But the real misery comes when you realize these things are never going to be enough. It comes from the knowledge that only finding self love can fill that hole – and trying to love yourself is hard when you never did. Once you see it's just you and the darkness, you can either stay up til morning or go to sleep. And while it's easy to say some are weak for not fighting, I don't blame them.
Because right now, I am unhappy. I walk around my apartment with swollen eyes, moping about how I'm just like everyone else, posting online about how I can't do this anymore, about how it happens every month, and every month like clockwork the darkness returns. But I know that soon the light will appear – so for today, I eat well, do yoga, meditate and run. I know it isn't a “cure,” but I know the more I take care of my body the more I'll see God through me. And maybe she can give me strength so I can see the light another day and remember what it's like to be happy – to smile ear to ear, thinking that maybe – hopefully, this time – I've escaped the darkness.