PMDD/PME: Circus Life

(originally written in April 2019)

 Had we gone to see Captain Marvel it may’ve been a whole different cinematic experience.  As fate would have it we saw the perfect movie for all of us: Disney’s 2019 remake of DUMBO. My girls (3 of my 4 were there) all had wide smiles on their faces as the end credits rolled and - as cheesy as it sounds- I wanted to gather them into one great big group hug.  So I did.  I’m sure Captain Marvel would’ve exercised its own brand of magic on our sense of superhuman empowerment, but this was “just right” in so many ways and they each felt it. Our spirits rejoiced. I shall explain.

You see all of my children were born into a circus just like sweet Dumbo, the baby elephant.  Aren’t we all in some way?  Certainly our world, our families and our own minds can mirror the variety of acts in a traditional circus meant to amuse, distract, educate and mystify.  And sometimes, like Dumbo in his premiere performance turned homicide case, an act can go wrong. Mr. Medici’s circus is a perfect metaphor for my life with premenstrual dysphoric disorder (PMDD)and premenstrual exacerbation (PME) of diagnosed anxiety and depressive disorder.

It’s interesting that in the beginning I kept identifying with Dumbo, the baby elephant. I asked my youngest daughter (age 13) the next morning if there was a character she most identified with and she thoughtfully answered with a nervous giggle, 

“Dumbo.  All of us girls are Dumbo.”  

All of my daughters struggle with something that makes them feel different and want to “hide” a part of their dormant greatness, not unlike Dumbo and his ears. I winced inside a little yet relished her intuitiveness.  That means I’m more Jumbo at this point in my life: the protective elephant momma with baby Jumbo Jr. in utero, who looks longingly and hopefully out of the caged bar window at flocks of birds flying freely.   I do have to admit - that part did completely sear itself into my heart as I thought how many times I’d felt imprisoned by my faults and yet hoped for so much more for my daughters.  Jumbo had just been bought by Mr. Medici from India; yanked into salvaging his circus and about to give birth to Jumbo Jr,  sure to be a crowd pleaser.  As for myself, one of the acts I’d been yanked into, at a younger age than Jumbo, was anxiety and depression. Later, it would take the PMDD turn and that same anxiety and depression would get worse cyclically, along with the strictly premenstrual symptoms of bloating, extreme carb-load cravings, foggy brain, irritability, tension, sailor-mouth and rage (at its worst.)  But the first intimations of just the anxiety/depression combo began at about age 9..  

The combination of anxiety/depression had a strange paralyzing power over my adolescence.  It felt like I was muted and keyed up all at the same time and I had a hard time, especially in social situations, just being myself.  I was much better with the anxiety at home but I remember wondering what was happening to me one morning over my Eggo waffle breakfast as I wished I could disappear and not have to endure another day at middle-school.  I was now 12.  And I had not yet started my period.

My period.  THAT was sure to be a great day!  Wait -who says that?!  I did.  I really did.  My mom had ordered some discreet, rectangular boxes from the Stayfree company for my sister and I and we had found them in the linen closet back when we were 10 and 11.  They were sealed only to be unveiled, we presumed, when one of us started “to become a woman.”  But this surely would not do! We both wanted to open them IMMEDIATELY upon discovery.  And so we secretly did.  It was a magical Pandora’s box full of teenage mystery.  There were pads, liners and a booklet on everything we needed to know to make “the change” effortlessly.  We read it aloud, forwards and backwards, and it seems we were actually performing the narrative booklet.  This menstrual circus act seemed manageable and maybe even fun as the kit designers and copywriters really knew their stuff!  I mean we were told we could even SWIM during our periods if we learned to use tampons!  What made these kits even more fun was the fact that, after each “period tutorial session,” we carefully repacked the contents and placed them back in the linen closet AS IF THEY’D NEVER BEEN OPENED.  It was a very clandestine operation and I don’t know how we contained ourselves.  It’s a little ironic to me how much I longed for the day when I would join Mother Nature’s Club of purse-toting young women.  Our older sister didn’t seem to enjoy her period much but that didn’t dissuade us.  We were armed and prepared; and a good thing too, because as it turns out, nobody really likes to talk about the menstrual cycle.  

Friends apparently passed me by.  My younger sister passed me by. I thought for sure something was wrong with me but all the teen magazines swore that anytime between 12-16 was “normal.”  So you can imagine the euphoria that was mine when a month before my 16th birthday I saw pink.  It was slightly anticlimactic but I was so relieved – and prepared!  

While I realized that my moods could vacillate and change as a teenager, I wasn’t really in tune to any cyclical pattern until I began wanting more interaction with boys.  Then I would notice that there were times when I felt more myself and comfortable socializing and then there were other times when I was frighteningly UNcomfortable and was almost rude in my aloofness.  It wasn’t that I wanted to be aloof.  I would actually force myself to keep up my regular schedule and be social.  What it did make me do was be extra hard on myself, extra sensitive to perceived rejection and judgment from peers, and go into protective and defensive mode.   This all seemed par for the adolescent course since every teen feels like “nobody gets me”.  At least I hoped it wasn’t just me.  I just continued to force myself to be where I wanted to be and do the things I really wanted to do even though they often scared me to death.  I was involved with my faith community and the youth group there.  I attended dances, early-morning scripture study before school and weekly activities.  In school I had a few good friends who enjoyed music as much as I did.  Choir class was a place where I found refuge and re-centering.  I tried out for the school musicals and got a solo singing part twice.  These performance opportunities were just enough to uncomfortably stretch me but thankfully not too main a part where I would implode with anxiety. 

College would bring another circus-ring-level of excitement and anxiety into my life.  I attended a large university with tons of students from all over the United States and world where 80% of us shared the same Christian faith.  That was an important factor for me because my spiritual relationship with God was an anchor to me; especially since I perceived my moods were often vacillating.  It was comforting that even though my social-anxiety made me feel very different than others, my faith was something I had in common with most everybody there.  I met someone right away whom I ended up having one of those “best friend/maybe boyfriend” relationships with.  We were together almost everyday which was really new for me. It wasn’t long though that my moods would begin unraveling periodically. One day I would be all in and another day I’d be irritated and disgusted with him.  I was quite confused and confusing. My second year I began dating someone else and we really seemed to click.  Again, I would start second guessing him and myself.  Though initially crazy about him, and he me, I’d suddenly get sad and forlorn about things.  We would be on and off again a few times in the next year.  Our first break up sent me into a tailspin.  I got super depressed and it was the first time I would seek professional help.  That’s when I got my first diagnosis of depression with anxiety, had a psychiatrist prescribe me Paxil (my first SSRI), did one-on-one counseling and also experienced group therapy.  Group therapy was a revelation to me; to see the things other peers struggled with. But the Paxil really did seem to save my life, as did my strong faith that I was a divine being having a temporary earthly experience.  This was temporary.

But let’s get to the good part. The BIG TOP performance of my circus life: motherhood.  See I had always wanted to be educated, find love, get married and stay home and raise my kids.  I figured there were always opportunities to be involved in the community, to hone my interests, serve others and develop my skills and hobbies, all while being there in my home for my family.  I did find my love and he saw the good, the bad, and the ugly parts of my mood disorder because I actually withdrew from my SSRI while we dated (philosophically, I hated the idea of being on medication.) That’s how I knew he was the one. He was steady and true. I actually worked full time our first year of marriage and then enrolled in massage therapy evening school while working days.  I had done a trial of regular birth control pills a year before, which is another story, that did not work out for my brain and sent me into a tailspin.  Since marriage I’d been on a once every 3 months DepoProvera shot and it was wreaking its own havoc.  Almost instantly I’d felt so depressed I wanted to melt into the earth.  Somehow I still got up to go to work and school but looking back I really don’t know how.  I couldn’t wait to get off of that.  I did, after a year, and - SURPRISE- we became pregnant. With TWINS. Mood-wise, it was a ring of fire in the beginning of the pregnancy, a walk in the park in the middle trimester (I felt really good), and a tightrope walk towards the end.  

But motherhood was where I really started to feel like a burgeoning freakish sideshow.  I feel like a variety of factors contributed to what would become the most trying years of my PMDD and PME (premenstrual exacerbation of my coexisting depression/anxiety).  These factors were the 3-ring circus of hormone changes (postpartum, nursing/weaning, menstrual cycles), sleep deprivation and special needs parenting that would intensely dominate my life for the next 16 years. 

 Please don’t read that and think  “Why did you keep having children?” But I get it if you do.

I have had 3 pregnancies and 4 children. I have found that life’s greatest joys also accompany life’s greatest trials. Just like in my marriage relationship, I knew I had something special to give and to receive, despite being imperfect.  Everyone has strengths and weaknesses. It is only in the worst parts of my dysphoria that my mind tells me differently; that I somehow have MANY more weaknesses than one should be allowed to have, especially when married and raising children.  That dysphoria is an awful, shame-loving beast, who, like Mr. Medici in the beginning of Dumbo, sees everything wrong with the way Jumbo’s “acting out” has affected his bottom-line. Jumbo, the mad-elephant momma, is whipped, shamed, chained up, boxed up and supposedly better off going back where she came from.  Things get even worse for her under Vandevere’s “care” where her life comes to be worth only what curious voyeurs will give to bask in her killer reputation as “Kali the Destroyer”- so beautiful yet so dangerous.  They know nothing of her tenderness and protectiveness for her child.  They don’t bother to ask “Why would such a gentle maternal giant go so rogue?”  Instead you can read the public’s minds…

 “Such a shame.” And shame is what keeps most women from seeking real help.

Unlike Jumbo, a.k.a. “Kali the Destroyer” in the remake of Dumbo, (a nod to the Hindu goddess of destruction in the fight for justice), who was chained and caged for viewers’ safety while on display at Nightmare Island, I used the tools of self-imposed isolation and a public mask of calm competence as much as I possibly could to spare myself and others.  This is like what a psychotherapist equates to holding a giant beach ball under-water.  Ever try that one for an extended  period of time? I fortified the physiological “human captivity” of PMDD by letting the shame of my biological/mental weaknesses prevent me from relating to and getting support from others.  For all I knew, I was alone. And a freak of womanly nature.

There is something in my American culture that rewards those who are able to “seamlessly” emerge out of oppression and handicap.  There is something even more powerful in my religious subculture that rewards those, especially women (because we are, by our nurturing nature, blessed with so many divine gifts and attributes), who can suck it up and persist through all manner of persecution, trial and natural disaster.  Notice those are all OUTWARD forces acting on a woman, who, if protected and shielded by her faith in God, should be able to come off unscathed and triumphant: a heroine for her offspring and posterity.  

But PMDD and PME act from WITHIN.  They use the very thing women celebrate- creative power- and I especially celebrated at the age of 15, and every time I conceived and carried a child, to shackle. Our feminine hormonal patterns, our reproductive powers, could somehow be turned on between 8-10% of cycling women, including me.  My greatest strength became my greatest weakness!  I could miraculously bring forth life but the lethargy, mood lability, and mental darkness up to 18 days of every 27-30 day cycle, and post-partum and post nursing would make it difficult to consistently nurture it, let alone my own life. How could this be? 

For me the answers would come slowly and gradually, sometimes with 2 steps forward and 3 steps back.  I have come to appreciate and acknowledge that it is, and has been, a lonely heroine’s journey. There is still so much to be learned about the forces that contribute to PMDD/PME.  How much better it would be to have medical and scientific companions in this cause! I was fortunate to have one physician’s assistant actually validate my struggles with my own hormones.  She was no expert but she was open and supportive and willing to systematically rule out any contributing factors such as insulin resistance (I did have that at this point) or thyroid imbalances ( I did not).  She gave me my first “Monthly Calendar of Menstrual Symptoms” in 2001 at the age of 32.  I had already been in “captivity” for at least 14 years.  Many years later social media would introduce me to the Gia Allemand Foundation, which is now IAPMD (International Association of Premenstrual Disorders) and the brave and vulnerable women who serve and find support there.  It would take the tragedy of Gia’s suicide during her luteal phase to propel a few women to organize, support and educate.

Like the movement to understand and advocate for the physical and mental health of elephants in captivity, the story of the PMDD Warrior has been one of first sympathy and then empathy.  For years small advocacy groups, who had sympathy for these very intelligent and social animals being broken by harsh treatment to make them trainable and able to “perform” unnatural tricks and tasks in close contact with humans, spoke for those who could not speak for themselves. The elephants themselves only got concern and attention once there were human casualties, such as what occurs in the movie DUMBO: a trainer or village person being killed.  What caused the animal to act out this way? From there, research was done on what the difference is between wild and captive elephants.  Carol Buckley, who co-founded a 2,700 acre natural-habitat elephant sanctuary in Tennessee, says this about elephants:

They are the same animal, in captivity and the wild. The difference is in their responses to experiences. Many captive elephants have been systematically brutalized by humans and, as a result, are shells of themselves. They are like prisoners of war, knowing that their day-to-day existence relies on their captors. (https://blog.nationalgeographic.org/2013/02/07/life-for-captive-elephants/)

Yes!  Like elephants in captivity, we women with PMDD/PME are still women but often end up feeling like shells of ourselves!  We are beautiful and we are strong. We just have physiological differences in our responses to our own personal and hormonal experiences.  Over the years, as we vacillate between our productive and unproductive days and weeks, this wears on our health, our self-esteem, our careers and our most important relationships. 

Pretty soon, if legislative and social pressure continues, there will be no more elephants in circuses.  Because now scientific research supports that it is unhealthy.  And current ethics dictate that it is inhumane in a civil society. They will be freed, like the famous Ringling Bros. & Barnum and Bailey Circus elephants, after 146 years of their show, to proper sanctuaries, following the lead of 36 other countries (https://news.nationalgeographic.com/2017/05/wildlife-watch-ringling-circus-animal-welfare-photography/).  I hope that similar concern and measures will be enacted to protect and treat women whose brains are vulnerable to their own hormones and other aggravating factors.  Healthcare providers need to be educated and equipped to diagnose and offer helpful treatment to both younger and older women who show up in distress.  Funding for more research must go to women’s mental and reproductive disorders.  Women in distress need social support to keep their self-worth, jobs and families intact.  

To truly understand why an elephant in captivity might become destructive you need to know something of elephants in the wild and what human captivity and harsh training practices (in other words, a provocative environment) does to one.  This same scientific curiosity and humanitarian compassion should be extended to a woman with PMDD/PME before judgment is passed. In most cases, you will not see women like me with PMDD at our worst because we tend to self-isolate on our really bad days. But with support, curiosity and compassion from others and for ourselves we can see both our great humanity and our divine worth. Like Jumbo’s flock of free birds seen through her barred window, that is my great hope for myself and for our mothers, sisters and daughters.  It is why I emotionally hugged my girls after that movie and why I will warrior on until the prison doors are opened- and we find sanctuary.

Medicated: “Seeing through a glass darkly”

Photo by Christie Thomas from FreeImages

I’ve been listening to a lot of podcasts lately,  searching out the stories of marginalized people who are overcoming life’s challenges and society’s prejudices. I am intensely curious about the individual human experience and have been since I decided to read every single book in the American Heroes biography series at Smoketree Elementary’s school library. There was a pretty broad spectrum of early American historical figures from Dolley Madison and Harriet Tubman to Paul Revere and George Washington Carver.  I was pleasantly surprised to learn about so many women from this collection.  Even as a young girl I felt a lack of historical representation and pretty much ate up the stories of these women who gained notoriety either on their own merits or through the position of their husbands.  I was touched by Mary Todd Lincoln’s struggles with grief and depression as she outlived her husband and three of her four children.  I admired Florence Nightingale’s compassion and her vision and drive to improve the care of wounded soldiers.

So what does this introduction have to do with being medicated, as the title of this entry suggests?  I went through a mini identity crisis last week.  I was pondering, perhaps for the thousandth time, who am I?  What do I really feel?  What are MY needs?  And, does anyone else really care? How much does my SSRI medication blunt me from the reality around me from day to day?  Would I be able to represent myself better if my brain wasn’t constantly infused with recycled neurotransmitters bathing my synapses?  Have I lost touch with my true feelings and passions and drives as this brain state has been my normal setting for over 19 years straight (with only a few switches in dose, formula and regimen)?  To reference Paul’s first  letter to the Corinthians,

12 For now we see through a glass, darkly; but then face to face: now I know in part; but then shall I know even as also I am known.

How dark is my glass?  Does this medication make it darker?  Can my Creator see through whatever mists this medication creates and see the true desires of my heart even if I am not feeling “clear”?  How shall I “know even as also I am known?”  

I understand that this scripture is distinguishing between what I can know NOW and what will be made clear at a future time.

10 But when that which is perfect is come, then that which is in part shall be done away.

I realize through seeing the context of these verses that the answer regarding clarity is CHARITY- the pure love of Christ- the ultimate lens of true worth, experience and value.  The whole chapter is a treatise on charity and its ability to conquer all doubt and discouragement- in ourselves, in others and in doctrine- and to have faith in Christ’s mission, love and atonement.  

So I talked myself off the ledge with the Spirit’s help.  I am grateful for my treatment plan even if now it is only “part” and not “perfect”.  It enables me to hold on and continue to learn new things; to witness the lives of my children and to continue in patience in loving them and my husband as I love myself.  I may never contribute in a grand way worthy of an entire chapter book.  But I can, in a small and simple way, testify of what faith in the Lord Jesus Christ can do for an individual and a family.

Happy Joy Joy!: Why I Am Skeptical of Happiness OR Welcome to My PMDD

I once got mad at an ex for using exclamation marks after every sentence in his letter to me.  It's sad but true that I am leery of overly enthusiastic sorts.

But today?  Today I am going to bask in the feeling that tiny little effervescent bubbles of quiet joy are rising to the surface :-).  The last 5 days or so I have felt unusually peaceful and not as high strung as I tend to be during this time of the month.  YES- THAT TIME; the week preceding my period where I usually want nothing more than to be left alone and if you know what's good for you, you would be more than obliging.  It's NOT typical.  It's NOT PMS.  It's much more debilitating than being a little more moody than usual.  It's an ultra sensitivity that some women have to their own hormonal fluctuations which manifests itself physiologically by way of overcompensating for the imbalances their bodies perceive are threatening their homeostasis.  It's called PMDD which is short for "pre-menstrual dysphoric disorder."   Less than 10% (numbers vary between 3-10%) of menstruating women have it which is probably supposed to make me feel special, but it doesn't.  Especially since I have never been a "typical" enough case to actually be diagnosed as such.  Without going into too much of the diagnostic aspect of it (go here http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004461/ if you'd like to), I can have depression and irritability on days other than the typical week before your period.  But that being said (and it even acknowledges it in that link), there is definitely someone pumping up the volume dial of my symptoms those 7-8 days (anytime after ovulation really, i.e. second half of the cycle) before the relief that comes with my period.  Yes, the relief.  So if you're miserable when you start your period, you probably don't have PMDD.  Other unpleasantries and disruptions to your life?  YES. But PMDD? NOT SO MUCH.

OH MY GOSH!  I really wanted to talk about how good I feel right now!  But I always feel the need to give background information so you (really I'm writing for my own clarity but if this helps you that's awesome) can get the BIG PICTURE.   And there's a lot going on in this picture (maybe even enough to create my own IMAX movie).  Make no mistake, this is really personal stuff and not something I usually bring up in many conversations.  And it's taken me YEARS (I'm 44) to give voice to it.  This is me being almost as vulnerable as I can possibly imagine.   I finally have some time, with all my kids in school and working part-time at home, to work through this and allow God to bring everything together so that I can really begin to heal.  I wish it hadn't taken this long.  I have been trying to do the right things for myself, my body and my family all along but, alas, I am so very mortal- so flawed- and I need help and I need the faith and hope to understand that help IS available.  I have felt trapped by some of my life situations and I have felt extremely liberated by others.    What is this opposition that continually besets me? Why must my earth life be so RICH with this experience?  Well, there are a few scriptures that answer this for me: 2 Nephi Chapter 2 (The Book of Mormon) and The Doctrine & Covenants section 122.  You can Google them if you like.  But here is my favorite part where Jacob's father, Lehi, sounds a LOT like our Heavenly Father in addressing his children:

 I have none other object save it be the everlasting ^awelfare of your souls. 

I read a book this past week which may also have a LOT to do with why I feel lighter.  Now I've read MANY a near-death experience book before and I enjoy them much and they also create a feeling of lightness, love and eternal perspective for me that I crave.  This one left me feeling those things too but a little more earthbound.  It was not an NDE.  At least not in the near death of the physical body sense.  The woman was alive but so spiritually and physically exhausted that she thought she'd be better off dead.  She was a very prayerful mother of 4 kids going through some health struggles, financial stresses with their businesses and the stress of parenting.  She actually decided to get on her knees in her extreme distress and offer one last prayer to explain to God why she couldn't go on and why her family was better off without her.  According to her, an angel came and invited her to come with him.   In so doing her spirit did separate from her physical body and she had an experience witnessing the time before her birth when she was in an educational facility where we all prepared for our earth lives.  She met with Heavenly Father and felt of His confidence in and love for her as he extended an invitation to her to receive a special assignment should she so choose to accept it.  Her memories of her pre-earth life and how much she had already grown and become at that point amazed her.  Everyone there amazed her.  We were ALL amazing and on earth, with a more metaphorical STEEL than GUAZE like veil placed in our brains, only understand tiny glitches of how amazing we were -and are- in this life.   And she was amazed by how perfect Heavenly Father is and how he loved and deeply cared for each of us and how much we trusted and wanted to become just like Him.   It's called A Glimpse of Heaven: One Woman's Life-Altering Visit with God.  The rest of the book is about how she goes about fulfilling this "mission" despite many setbacks and some of the unromantic outcomes.

One of the interesting things that struck me about this experience was that, like many others who've had NDEs, the circumstances leading to and following such encounters were not always neatly resolved.   Like it or not, life has a natural form of resistance built into it so that we don't become complacent or negligent to character building experiences, even if we've seen God and know some of the switches and levers behind the Great Oz's curtain.    After reading so many different beyond the veil accounts I see how presumptuous it is to only know more of the plan through more of our senses.  We must experience it.  We must experience it IN a mortal body.  It is only through this very personal struggle that we come to truly know God and what we are made of and by whom we can be made whole again.  And WHY.  Why?  Here's another scripture from 2 Nephi 2.  Verse 25
tells us:

^aAdam ^bfell that men might be; and men ^care, that they might have ^djoy.

I believe that JOY is the ultimate appreciation for and true understanding of real LOVE.   This kind of love can only be experienced between Creator and Creation.  We felt a portion of that before we came to earth.  Then we feel the distress that comes through separation at birth from all that we knew and loved (even though we forget everything, our spirit matter remembers and grieves) but we get to experience new connections here in families, friendships and communities; people we may have even known and been connected to before.  But our Creator is unseen; He who first created us and loved us. We can see evidence of Him everywhere in the other works of His creation (Nature, Space, others) but we miss Him and the Light and Love that emanate from his physical and spiritual presence.   There are limitations placed on us because of what Christians call the Fall.  We are now working our way back up-- the RISE I guess you could call it.  But, don't be fooled,  it looks more like a roller coaster than an escalator and there was a huge piece of track missing that only Jesus Christ could rebuild and has through a thing called the ATONEMENT: a sacrificial offering of love and Priesthood power.  I think my personal trials in life have done everything to illustrate and bring this concept home for me.  Being a woman and mother is no cake walk but I have come to learn something of the love my heavenly parents must have for me when I share tender moments with my kids.  My mental and physical health struggles challenge me to reach up and out for insight and the strength to forge new habits and solutions that will bless me.  Mostly I struggle with the patience it takes to serve imperfectly, realizing that God's grace is enough to make up for what I lack.  And I get discouraged and feel like God is ignoring my needs.

But He's not. That's why I wanted to write today.  I want to thank my Heavenly Father for inspiring me in all the little ways that seem to finally be making a big difference.  Those, I suppose, will be topics for future blog posts because I really need to get off this computer.  But know that I know He is helping me!  (yes, that is an exclamation point!!!)