Dysphoria, meet Dysphoria

Dysphoria, meet Dysphoria

I’m writing this today, not as a woman, but as a person. A human being. I’m writing today as myself. That’s important to me. I’ve thought a lot about this topic over the last year or so, a lot. It has consumed some nights. Trying to understand in case I did feel like discussing it one day I wanted to get it right. Often I worry about getting it right based on what I think other people want to see. In this case, I don’t think that matters. My perspective matters. I have so much to say and I struggle really hard to stay on topic when I start writing. I don’t write often, not as much as I would like, but when I do it just starts to pour out of me and like if I don’t get it out now, I’m going to lose it forever. Which isn’t far from the truth. Certain things come back around, but many are lost within my head.

What am I talking about then? Being nonbinary. Why? Well, even though I didn’t know it at the time, I was always nonbinary from the first moment I questioned “Why do I have to be a girl?! Its not right!” Oh lord, how I did not want to be a girl. I didn’t want to be a boy either. I wanted to be Laura or whoever I was. I wanted to just be a person. Sure some days I played up my female assets, that’s what I was expected to do because I was supposed to be female. But I’m not. Its an outward wrapping over a mind and soul that is very much just me and doesn’t feel comfortable being labeled as female or male. It feels incredibly wrong.

Why am I talking about this here? Menstruation, PMDD, pregnancy, post partum psychosis, all of it worsened a dysphoria I have suffered with from a very young age and never had any name or label to call it. In my disorganized world, I like labels. Labels make me comfortable, so when something is felt but has no label, well its scary. This dysphoria was gender dysphoria. Sure I had pretty dress and shoes, long hair, and read and did girly things. I also played with grasshoppers, wandered around in the woods, wanted to fight mythical creatures with swords, I wanted to save the damsels and the animals. I wanted to be the hero. But girls weren’t really heroes. Not even in the 80s and 90s really. I loved wearing my jeans and tshirts. I loved cars and dinosaurs. I enjoyed “boy” stuff which is kinda acceptable. You know what I didn’t like? I didn’t like baby dolls or barbies. I thought they were just absurd and pointless, no imagination, no creativity. They were only useful as riders of all my various horses. I did love horses. I also remember feeling very often how unfair it was that I be born a girl, it wasn’t that I had wanted to be born a boy, but just the unfairness of it all. I didn’t want that life. And I felt very uncomfortable being pushed into a role that I didn’t choose, I didn’t want, nor one that I could any where close as well as those who apparently understand it and enjoy it. In elementary I was consistently told I was dyke, lesbian, and all other kinds of unkind names. I didn’t understand it. I knew it was negative to them and the part that I didn’t like was that they were rejecting me some how. But the words themselves were lost on me. Thanks to my naivete. Yes, I was different. I was something to be scared of and I didn’t understand why.

Then came puberty and the slavery to hormones and womanly things began. Now I had to be a proper young lady now that I was bleeding out of my uterus each month and could produce babies! I grew out my hair, I dressed for my new body, learned makeup and hair dye. You could say I went provocative all the way. Well, if I had to have this body, wasn’t that what it was supposed to be for? Sex? Attracting men? Isn’t that what I was supposed to be good at? Oh how I wish I could go back and just hug myself and tell me how wrong I was.

I hated menstruation. I hated my periods. I felt dirty. I felt wrong. I had no control over it and that made me feel even worse. And now I had to be responsible for so much more. Taking care that I had pads or tampons, making sure that I didn’t bleed over my clothing, washing underwear because it was stained, or the sheets, the spots on the mattress. It was horrifying to me. I know many feminist aren’t going to like this part. I’m supposed to like bleeding every month, be in touch with the nature of my body. For me, that’s bullshit. I hated every moment of it. Remember my birth control pills. Buying pads that itched and were bulky. The cramps. The fatigue. The crippling migraines. Cleaning blood off my hands, legs, vulva. I cringed every time. I hated it. The fact that I could have babies. Eww. I felt more alien in my body.

And there are those who tell me I’m supposed to love that part of me. No. I can’t do that. Not even now.

Dysphoria, meet dysphoria. My mental health took a huge hit with menstruation. PMDD is brutal all on its own. Add to that many unknown diagnoses and you have a maelstrom of self loathing, hatred, shame, and confusion. My headspace was never good most days, but the cyclical PMDD crushed me. My period started when I was 14 and half years old. Is it a coincidence that by the time I turned 16 I was dropping out of high school? I think not. Is it a coincidence that I got married before I was 19? I think not. That’s what girls do right? Get married? No offense to my husband, we are still married at 16 years and I do love him still! But it was a role I was playing. Is it coincidence that until my PCOS made it so my periods would skip for months at a time that I couldn’t keep a job? I think not.

Nearly 3 years ago when I had my surgery, part of the relief was not just that I no longer had PMDD. But that the very things that so many people consider critical in being female were no long a part of me. I could cry with joy at the thought that I no longer have a uterus! I can no longer have children. Many women cry because they think this means they are no longer a woman. For me? That is what I have wanted for so long. And I feel shame for that. I feel shame for being glad that I am rid of that which so many women would love to have again. But I’m not a woman. I’m not. I don’t expect you to understand. I felt enslaved. I felt forced. I felt violated. Just by having a uterus and ovaries and all the rest that came with it.

Now, I feel free. I’m not a woman. I’m me. A person. Free of PMDD. Free of servitude to dysphoria upon dysphoria. I have so much work still ahead of me. So many more holes to claw my way out of. This though, this is freedom to be able to do just that.

 

Menstrual Related Psychosis

Let’s talk about Premenstrual Dysphoric Disorder and experiencing mania or psychosis! Yes, this does happen. Yes, it is often misdiagnosed. Yes, it can be treated. Yes, you can live a better life. PMDD can be a very hard disorder to live with. When you get thrown in manic or hypomanic symptoms or possibly psychosis, it can make life unbearable. It is important to talk about this as it is nothing to be ashamed of, its more common than we all think, and there are things to do that can help. First, is to understand how and when mania/hypomania or psychosis may present for you. It’s true it’s not the most common issues when dealing with PMDD, but women do experience it so let’s talk about it.

Mania or hypomania are different and are experienced differently. If you are experiencing these symptoms it does not mean you are bipolar even though it is most commonly associated with bipolar disorder. Manic episodes generally last a week and include a feeling of euphoria, elevated energy or irritability. Manic episodes also generate racing thoughts, rapid and pressured speech, decreased need for sleep, grandiose ideas, rapidly changing conversational topics that are unrelated, restlessness, impulsivity, poor judgement, and engaging in risky activities. Hypomania is usually an episode that lasts 4 days and includes many of the above symptoms but not to the same extent, it is milder. Especially be on the lookout for increased participation of goal oriented activities or engaging in activities that have a likelihood of negative consequences.

Mania or hypomania may occur both before or after ovulation. For myself I experience hypomania and sometimes mania, prior to ovulation. I felt wonderful, I felt I could conquer the world, I engaged in way too many activities, was very impulsive and compulsive and overall I ruined many parts of my life. It was very tricky to identify what was being happy or what was hypomania. Yes, I received a misdiagnosis but upon finding the right path for me and understanding more about my hormones, how they affected me, and tracking carefully I could be conscious of my hypomanic episodes and reach out to family to help me. Sadly, bipolar medications were not of any help since it was a hormonal issue for me.

I want to address psychosis now. I happened to suffer from postpartum psychosis and sadly it continued to be a monthly experience for me there after for years. It was one of the most traumatic experiences monthly for myself and my family. Because of misdiagnosis and not knowing that hormones can in fact induce psychosis, I felt so horribly alone. I felt broken and that I was a burden on those around me and was only traumatizing them. As many of you well know, PMDD has a nasty way of making you feel like you need to save your family from yourself, when you add in psychosis with hallucinations that tell you the same thing, sadly it is more than enough to drive women over the edge and to suicide. I’m including this list of possible symptoms many of which women with PMDD suffer through each month, the kicker is going to be the second part of this list.

  • Social withdrawal/social isolation or loneliness
  • Apathy
  • Agitation, restlessness, hyperactivity, or excessive excitement
  • Anxiety, nervousness, fear, or hypervigilance
  • Hostility, anger, aggression
  • Depersonalization (a combination of intense anxiety and a feeling of being unreal, detached from oneself, or that one’s thoughts are not one’s own)
  • Loss of appetite
  • Worsened hygiene
  • Disorganized speech like rapid and frenzied speaking, incoherent speech, and excessive wordiness
  • Disorganized behaviors, like a lack of discretion or restraint
  • Catatonic behavior

The second part to identify an episode of psychosis:

  • delusions (beliefs with no basis in reality),
  • hallucinations (for example, hearing, seeing, or perceiving things not actually present),
  • the sense of being controlled by outside forces, or paranoia
  • disorganized thoughts.[i]

This list is not here to scare you, this list is simply to let you know that if you are experiencing any of these symptoms along with your PMDD, you are not alone. It is helpful to have information that can guide you on the right path to treating yourself and taking back your life. It wasn’t until years later that I had heard about premenstrual psychosis, as it is no longer studied in the medical profession. At one time it did exist, so its is entirely possible for a small population of women who suffer from PMDD, to also exhibit psychosis during their cycle. It is of utmost importance to know you are not alone, to know that these are symptoms of a chemical sensitivity and something that can be treated.

After ovulation, and my progesterone spiked I would suffer from psychosis, with hallucinations, paranoia, disordered thinking. I would also experience moments of depersonalization and rage. It was like my mind had been hijacked. I was a little girl sitting in the corner of my mind, watching my body go through these horrors, hearing the words come out of my mouth that I could not control but wanted so desperately too.

PMDD is not an easy thing to battle month to month, as soon as you get a short reprieve, then you are right back at square one. We try so hard to mask our difficulties but I’m here to tell you that it is crucial to getting the help we all need to be completely upfront about what we are going through. You are never alone, there are millions of women who battle PMDD and who even have similar stories to you. I know I am not alone. I chose to go the surgical route when I was 32 and have a total hysterectomy and oophorectomy. I no longer combat PMDD, I no longer destroy our lives with hypomania, and I no longer suffer bouts of psychosis. However, because of my battle with PMDD and all that it brought to the table I do have Complex Post Traumatic Stress Disorder. Please know, even when PMDD ends, we experienced trauma, we lived through trauma, and it is okay to still struggle in our daily lives. There will always be someone there to listen, someone who understands, you will never be alone.

If you or someone you know is dealing with PMDD, has episodes of mania/hypomania or psychosis, please reach out first and foremost. No one wants to go through this. There is help. While mood stabilizers may not always work, sometimes antipsychotic medications can help women who suffer with PMDD. There are always risks to taking medications, but there are risks not getting the help we need too. The first step is to always track, every day, to find a pattern to the symptoms. Many menstrual tracking apps can be useful and include many symptoms as well as the ability to write notes should you need to include further details. Talk to your loved ones, talk to your doctor. Let them know your fears about discussing this topic, what you are hoping for and what you don’t want to happen. It is your life and it is your body, you do have the right, even when you are suffering mentally and emotionally to control what happens to you. Reach out to peer support groups and educate yourself as much as you can. There is hope, it takes a lot of work, but there is hope.

 

 

 

[i] http://www.medicinenet.com/psychotic_disorders/article.htm

Pure – O

When I ran across the term pure O or purely obsessive compulsive disorder, it felt the same way as learning about PMDD for the first time. It struck to my core. There have been many things I’ve looked at and thought oh that does fit me, or maybe this is what I’m struggling with but few have resonated the way that PMDD did and now pure O.

As I’m writing this I have just a basic understanding of pure O but within me, with every part of me, it is my truth. For a time after my surgery for PMDD I was well. I was very well. I was succeeding at everything I tried. In fact just months after having surgery I successfully moved myself and my kids up to Washington, where my husband had been for the past year but I couldn’t join him due to being too sick every cycle. I was homeschooling and doing it well for once. I was able to organize our home better than I had in years. I was always cooking and planning our meals. Those first months we didn’t ever eat out. I was succeeding at taking my life back and achieving my dreams.

But something happened and it seemed to trigger a whole new bout of what I now know is pure ocd. I felt like everything I had been doing was a lie. That it couldn’t be true. That the monster still lurked inside me and this was all just a lie. I’m not well. I can’t be well. Why can’t everyone see that I’m not me, that I’m not what they think, that I’m still that monster. Then the thoughts that I might hurt someone, the constant fear of something bad happening, and me being the cause. The fear for my children and their lives. The fear that nothing is real. When you combine pure o fears with dissociations due to PTSD and you are already doubting reality, well it takes on a whole new theme.

Since I was young I have been very anxious. Neurotic. I’ve lived in constant fear it seems for nearly my whole life. Sometimes it swallows my existence, sometimes I can see through it for a bit. But I’ve never been able to explain why I’m so anxious, so fearful. I couldn’t put into words just how all consuming these thoughts have been and knowing that they aren’t rational hasn’t helped me as I keep dismissing everything but its still swallowing me whole.

I just spoke, in fact this morning, to my husband about how I felt that I was self sabotaging myself as a form of self punishment. For not being better. For not living up to the person that I know I could be. I wish I could put into words just what it feels like in my head. Thinking that I should suffer. Thinking that I’m this horrible thing, inhuman, that I deserve every horrible thing that has happened, because obviously these thoughts prove that I am disgustingly monstrous.

A near constant theme with my therapists has been me saying how worried I am that I’m a narcissist or a sociopath. I’ve even told them that I fear I’m a psychopath, I’m no longer in touch with my consciousness like I should be. And I get the same response each time, its impossible for a person who obviously cares so much about others, worries so much about others and how they feel, and making sure I don’t hurt anyone, that it just is not possible. I don’t believe them. No, my thoughts whisper to me that they are lying, just refusing to see what is truly there.

I read one blog post (My room is a mess but I still have OCD) in particular about pure O that cut me so sharply, that their words mirrored exactly my own being and my own thought patterns and I have to say I cried, in a primal way, as in the loss of your being. I felt my true self laid bare for all to see. I can’t prove that I’m a monster because I’m not a monster.

And in one particular poignant video from The School of Life (see here) was the description of  a sufferer of pure O as someone “who has derived the impression that they did not deserve to exist… (and their thoughts) an attempt match their basic sense of self and what would be needed by their society to concur with it.”

I don’t think I’m far off the self sabotage as self punishment when I spoke to my husband. My sense of self is, honestly, that I shouldn’t exist, I don’t deserve to exist much less be happy or successful.

So what will I do with this knowledge? I’m going to go seek treatment. Apparently, there is a form, ERP, that may be beneficial. I don’t like living like this. I don’t like living in constant fear of myself and the world around me. Feeling like a monster, an alien, that I have no right to be here and or that all I’m ever going to do is cause pain for others. I’m sad. I’m sad that again I’ve spent years struggling with something that has a name but is so unknown to so many. I’m sad because with out a doubt the phrase “obsessive anxiety” written on my daughters diagnostic report in some form or fashion is exactly my struggle, which I too had a that young age, and that I have not searched out for the proper therapy for her yet. I’m sad that I know moving forward that it will hurt to try to heal this part of me. Because it is my core. It is me. I am, truly, the monster inside me and my own worst enemy, just not in the way I believed before.

To my Mom…You are a hero

I didn’t get a chance to write this yesterday. I wanted to but my head wasn’t in the right place. I pondered for weeks what I could get my mom for mother’s day. She isn’t your typical mom, much less a typical woman. Her needs and wants are hardly expressed and mostly, she is content. Except she misses her grandbabies. 😘

My mom is human this she is flawed and imperfect. Her biggest flaw to me though is not seeing just how incredible she is, how strong she is, how intelligent she is, and the most loving soul I have had the privilege to know.

My mom fought so hard against mental illness and stigma. And there were days she failed, but she found a way to keep going. I’ve been there Mom, I know how hard that is. I know how much it hurts and the guilt and the fear that envelopes us.

Your fight, your strength, your bravery (yes you are incredibly brave) helped me through my darkest and deepest hells. I don’t need to compare our life experiences, there can’t be but we have both been in hell and clawed and fought our way back. We still traverse the pits at times but we go through it together.

I see soany other daughters have horrible relationships with their moms. I want to cry for them. Regardless of what happened in our past we hold on to each other and we are more than just.mother and daughter. We always will be. Mom, I couldn’t think of anything to get for you but I can give words to just how proud I am to be your daughter. How you have helped me through the worst times, watched over our little angels with more love than I could have hoped for, and held me when I needed you most. I love you and I miss you every day. You can never know what kind of hero you are because you can’t see what the rest of us see. Thank you for everything, thank you for your unduing love and support. Thank you for being my Mom.

PMDD or Menstrual Psychosis?

Let me explain, in my own experience, the difference between PMDD and menstrual psychosis (Brockington, 2005) having lived both. Now I will note that menstrual psychosis does not usually occur every cycle, it may happen for a few consecutive cycles in a row and stop permanently, it may start and stop over a period of years, it may last for a year or just a single month. Its also important to note that there is so much stigma attached to mood disorders and hormones and mental health, there is even more stigma attached to psychosis, in many cases those that may be experiencing psychosis will never get help because of that stigma. I was nearly one of them.
PMDD is brutal enough, but can you imagine welcoming months where its just PMDD? When PMDD seemed so much easier to deal with? No, not many can. Not the individuals who struggle with PMDD on a cyclical basis and not those who have never experienced it. There are those like me though, not many, we are a tiny sliver of the population and I wish that population didn’t exist at all. Menstrual psychosis is both alike and unlike postpartum psychosis. Both are acute phases of psychosis that end, with menstrual psychosis, the end may be at the onset of menstruation, or shortly after. Both are seen as conditions not to admit to, to not get help, and as monstrous. Unlike postpartum psychosis, menstrual psychosis can strike an individual at any point of their reproductive age/cycle, several of the cases are that of teenagers who never experienced pregnancy (Brockington, 2005). Some symptoms of psychosis are mania, delusions, suicidal and/or homicidal thoughts/actions, hallucinations, depression, insomnia, paranoia, dissociation and there are more but those are the main ones. Those are ones that I personally experienced, though I never acted on any homicidal thoughts, there were enough to make me want to lock myself up and throw away the key or to die by suicide just to prevent me from hurting anyone if I truly got lost in the maelstrom.

If you are experiencing any of these symptoms mentioned above now or have in the past, please seek out help! You have rights and you can have a say in what kinds of treatment you receive regardless of the cause, but you owe it to yourself to get help.
There is hope. You are not alone.

I had PMDD from the start of menstruation. For me it started as horrible cramps, bloating, flu like symptoms, migraines, depression, anxiety, and self harm. It affected my education, my friendships, my family and myself greatly. I developed numerous destructive habits and behaviors. Every month was a battle that I did not know the cause and was just downplayed that every other woman who menstruated struggled with. I had no idea. My mom had no idea. My doctors had no idea. I also had PCOS, which in truth I was thankful for because even though I hated what it did to my body, I was stable in the months in which I did not get my cycle. And when it stretched on for months and months of me not getting my cycle and being infertile, I felt relief. I hated birth control, it always made me feel ill and off but I would take it for a few years, then stop, then start. I ended up missing a lot of work, every month the migraines and the mood swings would take over. The debilitating cramps and always getting sick. It took a toll on my relationship and my career, I couldn’t be trusted. I can’t blame them, I didn’t trust me either. I struggled through my 20s, went through college, held multiple jobs, found stability finally but still it was only at the grace of those around me and who supported me.
Menstrual Psychosis – Hell has a name and it is hormone fluctuations.

I did not have menstrual psychosis until after the traumatic birth of my second child. At that point I was told it was postpartum psychosis. Later, you can find menstrual psychosis written down in my medical files, they just never told me. It didn’t go away though after 8 months postpartum. It kept coming back, no in the same extreme way each month, but every few months or so, it crept in and I was lost again. I don’t know why some months were so much worse than others. I do know that I was misdiagnosed for a long time, bipolar does not include those symptoms of psychosis. I do know that my psychiatrist was way over their head. I do know that all the doctors and hospitals I saw should have connected the dots to my cycle or listed to me when I told them that it was connected. I know I was failed by our medical community at large. Can I fault them? No one wants to admit to psychosis and treating psychosis is still barbaric to this day. Not that ripping out my ovaries and uterus is not barbaric but it just isn’t the same when it comes to the brain.

Psychosis does not mean you are a psychopath.

The worst parts of the psychosis was the mania and delusion and then the hallucinations that followed. I experienced the mania/hypomania more often than I experienced the hallucinations, always before I ovulated. Estrogen is a feel good hormone after all. I experienced the hallucinations after ovulation, when progesterone spiked. The spike sent me to the lowest places I could never imagine. I experienced mostly auditory hallucinations, but the developed as images sometimes, mostly in my head but sometimes I felt them hanging over me. I hallucinated angels tell me to end the suffering that my children were going to have to live through. They told me to kill myself so many times. I fought and I fought, but only a small part of my brain at those times knew this wasn’t right, this wasn’t real. Thankfully it won most of the time. I’m not afraid to admit I tried to die by suicide. No, I do not think its selfish. I don’t care what anyone else says. I know what I faced, I know what I felt, and I know that it was for protection. I’m still here, I’m still fighting, I’m trying to get the word out.

I struggled with paranoia and impulse control. I still can struggle now, but its not to the same extent. I didn’t believe that people were out to get me, rather that everyone judged me and found me wanting. I was also delusional in certain instances, believing I could be or do something that I just couldn’t or shouldn’t even attempt. I also struggled with dissociation, such as derealization and depersonalization. Where I felt nothing was real or that I was not part of my body, like an outsider. I even experienced out of body experiences in some of the worst moments.

All of these symptoms were on top of the regular PMDD symptoms, the rage and irritability, the rapid mood swings, the flu like symptoms, the cramps and migraines. I could barely breathe but when I had months were it was just the PMDD stuff, I felt relief. I could deal with that. The psychosis always came back though.

My memories are faulty, as is often the case when people suffer psychosis and I struggle with PTSD from it all now. I struggle because I can’t remember my daughters when they were little, or concerts I went to with my husband. I can’t remember so much or really who I was before all this mess. I get glimpses, but its like looking through a stained glass window, its distorted, both beautifully and disturbing in the lack of clarity, wholeness.

Nearly two year ago, I found out about PMDD and went down a new path of treatment. I ended up having surgery to remove my ovaries, uterus, and cervix and now am in surgical menopause. I manage my hormones with estradiol hormone replacement and as long as I keep it stable I do as well as someone who has gone through psychosis can be expected to. While my life may not be fun or what others expect life should be, I know where I have been and I am thankful every day that I do not have to face that. I survived years of menstrual psychosis, without being locked up and the key thrown away. There is hope.

If you or someone you know is struggling with PMDD or another hormonal mood disorder please consider checking out the resources over at the International Association of Premenstrual Disorders, iapmd.org, a nonprofit organization that is dedicated to help those who suffer from these debilitating illnesses.

April is PMDD awareness month. Please pass this on!

  1. Brockington, I. (2005) Menstrual Psychosis. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1414712/

Mismanaged

I can only truly remember a few things that followed in the next years. I am not sure in what order they actually come in. They are like six second GIFs. They are not connected to any particular time. There are a couple I know approximately when they happened but nothing concrete. I has placed in inpatient hospitals at least 5 times in 5 years. Probably should have been a lot more. In those 5 years I had tried 50 different anti-depressants, anti-anxiety, mood stabilizers, anti-psychotics, and other psych drugs to try to level out my moods. I also wasn’t sleeping. We tried every sleep aid on the market, including Zyrem a form of GBH. I couldn’t have more kids without triggering post partum psychosis again so we tried a lot of birth controls but they did horrible things to me. For example, continuous bleeding for months and they told me to just ride it through, it would eventually end, it didn’t. My mood was already so unstable I don’t know what to attribute to the birth control, the medications, or just me. My husband ended up getting a vasectomy.

From the moment of my Bipolar diagnosis they had me on mood stabilizers like lithium or Zyprexa and my weight started going up and up uncontrollably, devastating me even more. I was going to be that horrible, insane, fat person who should have never been a mother. I didn’t bond with my infant daughter the way I wanted to. Maybe she knew inside herself how messed up mommy was. I was an ugly person now. I was irritable. I had rages, and though I was so scared of hurting anyone else, I tried to turn it all inwards. I became impulsive and compulsive. I took all kinds of risks. I stopped caring about what was best for all of us and cared only about what was going to get ME through that moment. I devastated our finances at a time I was on medical leave because I couldn’t take the stress from work without becoming suicidal. I told lies, lies, and more lies. I hurt my husband over and over again claiming he was abusive and didn’t care for anyone but himself. If he kept me from things that “made me happy” he was perpetuating the cycle.

By 2012 we had tried so many things and I was getting worse. Late 2012, my doctor suggested ECT treatment. I was willing to try anything to stop this. I underwent 22 extensive ECT treatments between December 2012 and February 2013. I remember very little. I don’t remember taking my oldest daughter to her first play of the Nutcracker for Christmas. I have pictures, but I don’t recognize them. I remember they always had a hard time getting the IV in before each treatment. I remember them struggling to get right strength of treatment and were worried because they kept pushing it up and up. I remember the sadness in my husbands eyes when I would collapse in the car afterwards for the long trip home. I remember the hopeless when we decided it wasn’t working for me. It had been my last hope.

In 2013, I managed to get a little strength at some point. Documenting when I was hypomanic and when the depression hit. I found a cycle. Every month. Near the time I would ovulate I was hypomanic, when ovulation hit I would crash and suddenly become despairing and suicidal for awhile. My period would come and something happened, I wouldn’t say I was normal but I was better than I was the previous weeks. Something told me that this was hormonal. It was tied to my menstrual cycle. Excitement!

My husband concurred with me and we went straight away to my psychiatrist. I presented the information to him, with my husband backing me up. I asked for a hysterectomy. The next words out of my psychiatrists mouth destroyed me. “They don’t do that.”
Then he talked about rapid cycling, which I probably had since I did cycle through hypomania and depression more than 4 times a year. I wanted to argue. And yes he did agree that hormones could have some impact on my moods but they were not the cause.
So on we trudged down the list of pills, trying old ones in new combinations, trying just released to the market, trying off label pills. Pills, pills, and more pills. I had been trying therapists but never made a connection with them, I didn’t feel it was in my head. It felt more like that something else was taking over my mind and body.

I began to get really hopeless. The suicidal ideation came much more often, multiple times a day. I was hurting myself more. Trying to stop the thoughts and just feel physical pain. Cutting was hard for me but that didn’t stop me from bashing my head against walls or punching myself. I don’t remember what year it was but I remember one night in particular, I think my husband had just gone to sleep, I got up with the intention of cutting off my hand. Why? Because then people would believe that I was I truly handicapped, that I was truly sick. They could see it and they wouldn’t dismiss my pain. My husband woke up before I did more than grab the knife but he had to fight me to get it away from me. I think I might have gone to the hospital that time.

Things kept getting worse and worse for us. In 2013 my husband was laid off. I panicked and tried to go back to work, but someone had told them I was dangerous, they filled my position, and I was out of a job and no longer on long term disability as a result. I looked for work, my husband looked for work. Bills had gone unpaid for a long time but we had always managed to pay our mortgage. I put on a happy face and pretended I was well enough for this. I actually got a job. I lasted three months, barely, but it came down to every day I was driving to work I wanted to drive the car across the highway median into oncoming traffic. I was scared I wouldn’t stop myself one day. I had to quit. Shortly after this happened we got a reprieve, a small one, but it helped. I was granted disability after a second go at it. However, it depressed me even more.

In 2013 and 2014 I started drinking, binge drinking, and taking more pills than I should at a time. I would steal some of my husbands pills too.  My husband would go to sleep and I would sneak out of bed and start drinking to drown my thoughts, however, it usually just made the thoughts worse. I think it was 2014, I don’t know if I was actively suicidal or just no longer cared. I took about 100 clonazepams, 2 mg with half a liter of rum. This is where my past is important. I had weight loss surgery. Which meant I do not digest things very well at all, in fact I am missing part of my digestive track. Malabsorption. This fact alone saved my life that night. My husband found me moments later and called 911. They got there, stabilized me, something about my blood pressure being low. That’s all I remember. They had me on lots of IVs to flush out my system, you cannot stomach pump someone with gastric bypass. Amazingly, my stomach prevented me from killing myself by overdose. I went into inpatient treatment after that.

Pills changed again and I went back to living each day just to keep breathing, to keep my children alive.

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These were some of my daily pills, some of which I took more than once a day. These were my psych meds and two supplements. I had other medications for other issues not pictured here. It was daunting.

In 2015, my husband found a job. Across country. It was only a contract for few months. It was in the field he wanted to work and might help him get experience so he could find permanent work. I pushed him to take it. We didn’t move with him. I couldn’t be left alone with the kids all day, I couldn’t be left alone with myself all day. Those four months I tried to live in my house alone, and keep my kids over a couple times a week, but mostly they stayed with their grandparents. I got worse. I never kept a clean house, but it got horrible. Unsanitary. I stole my husbands social security number to open credit cards and loans so I could buy, buy, and buy more things. I screwed up paying other pills. I didn’t take my medicine like I should. I just didn’t care about anything anymore. The lies were horrible and I am sure that everyone saw through me but were too scared to confront me. They canceled my husbands contract 2 months early, the project was a failure (not him). I panicked. He was now going to find out everything I had done. The stress and fear overwhelmed me. I now have two scars on my thigh, one 12 inches long and the other 8 inches long. The day after he got home, after the fights had already started, the hallucinations started. Auditory. Telling me exactly what they had told me after the birth of my daughter.

My husband took me to the hospital. Now let me be clear, inpatient psych wards are not a place where you go to get better. It is a place for you to be watched and nothing more. They are often hell holes and you feel even more fear and are scared of getting hurt the whole time. I did my best to tell the truth but I wanted out of there. I was terrified of this one patient muttering how he was going to tear the red headed fat women who had a rose on her back limb from limb each night, how she was a demon sent from hell to destroy children. That she needed to suffer. I did not hallucinate that person, other people heard him too.

After a couple days, I was “stable” and could go home again. I was scared, I knew what I faced at home. A broken family, a husband who was sick of dealing with me, and a lot of hopelessness. In the next weeks he was offered a chance at another programming job in another state with his dream company. It was contract again, but it was longer. He didn’t want to leave, I said he had to for the kids. We had to protect them. We had to do our best to provide for them. We discussed it with my parents and it was decided that the children and I would live at my parents house while he was gone. I was never to be left alone on my own again. We all knew I couldn’t be trusted.

So beginning in August 2015, I began living with my parents again, so they can watch me and make sure I don’t do anything stupid. Mostly. Things are better then they had been in awhile. I can semi participate with my kids normally. No body mentions my lack of self care, but I am all too aware of it. I am lucky if I shower twice a month. Taking care of myself is beyond my ability. I no longer care what clothes grace my horrible body. Make up and hair are a thing of the past. I hid behind baseball caps every time I left the house. I was such a bad role model for two little girls.

Anyways, in the past year I notice that I am having hot flashes and night sweats and other symptoms. I look them up and they match perimenopause. I am only 32, how can I be in perimenopause? It’s something to latch on to though. I do more research and decide to try a phytoestrogen to see if they relieve some of the physical symptoms. I start taking it November 3rd. By November 7th I am convinced I am perimenopausal. I haven’t felt better mood wise in years! The hot flashes disappeared. So I go to the doctor and say I want my hormones tested because phytoestrogen shouldn’t have this big effect on me unless something hormonal is going on. Labs come back, I am not menopausal. It doesn’t change the fact that this estrogen is really doing something so I don’t let it discourage me for long. It is turning my personality around! I have energy. The smile on my face is not by accident or force, it is just there. The suicidal ideation is falling away. My irritability is calming down and I actually want to do things!

I decide to test it further. I start tapering off my lithium and a couple of my other psych meds. I keep feeling better. Unfortunately, I have a reaction the phytoestrogen I am taking, it causes hives in my throat, so I have to find another one to try. I do, and it works as well. I am on to something.

By late December I am off all psych meds, oh and I have lost 20 pounds without doing anything else. I am feeling on top of the world.

I start mood tracking, because this is definitely hormonal.

The journey begins

My story. I think that more women than care to admit have been where I was and need to hear this. This is long but you need to hear the whole thing before coming to any conclusions.
Let me first set some things straight. I am not anti medication. I am not anti supplement. I am not anti ECT. I am not anti doctor of any kind. I am against throwing pills at anyone with the expectation that something will eventually work. I am against labeling someone treatment resistant. I am against when someone refuses to listen, really listen to all the small details. I am against bias and sexism and knowing that there are treatments out there that can work but doctors not willing to consent to their patients wishes.

Short history to me. My period did not start until I was 14. At which point puberty hit me very hard. Weight gain, headaches, acne, etc… In fact it was around that time I started to suffer from migraines very often and constant headaches. My parents ended up seeking treatment for me a special clinic hours away to help me cope. In 2000, at 16 I dropped out of high school because it wasn’t the place for me and studied for my GED. That fall I went to community college enrolled in an associates degree program. During this time I met a person I fell in love with on the internet. December 2002 I graduated with my associates degree and moved to Texas to be with the man I fell in love with. About a week before my 19th birthday I got married. I was not a girl to be held back from what I wanted in my life.
A few months down the line, we were watching something in a movie theater and I ended up in excruciating pain. Went to the hospital, had tests and ultrasounds done and sure enough I had PCOS. This explained the absent menstrual cycles that I wasn’t complaining about. Saw a doctor, they said birth control. I chose Depo-Provera (progesterone only injection) because I hated having periods. It didn’t help my weight issue. Beyond that my PCOS went untreated and I didn’t stay on birth control, I didn’t do well on it both physically and mentally. I didn’t really think anything of it at the time. Many women don’t react well to birth control.

Fast forward to 2007. We now lived in California, near my parents. I was in the process of having weight loss surgery to try to regain my life and start over. I was young and immature still but that is life. After weight loss surgery your menstrual cycle returns with a vengeance if it was stopped and you become regular again within a very short time. Something I hadn’t experienced in a long time and was infertile (due to PCOS) prior to the surgery. Shortly after my weight loss surgery I got pregnant. My doctors suggested abortion because I was putting my life at risk for what could possibly be a deformed child due to my surgery. I was able to maintain both the pregnancy and the weight loss through a lot of hard work and a lot of support. I have a beautiful daughter who is happy and healthy, who was coincidentally born one year to the date of my weight loss surgery. I suffered from a bout of post partum depression after her birth, was eventually treated for it with anti depressants, and rebounded to live a more productive and healthy life with my family.

Fast forward to early 2011. I was about to give birth to my second baby. Another little girl. In the last couple years I had made great headway in my life. I had my taken good care of myself self and lost 135 pounds after the surgery. I was raising a beautiful daughter with a head full of strawberry blond hair. I had finished both a bachelors degree and a masters degree in accounting. I had recently transitioned from a contract data clerk to a full time industrial engineer for an aerospace company. I thought I was beautiful, loved my clothes, even though I was still a size 14/16, I was confident and proud of myself. I felt vindicated in my choices and I had a happy beautiful family to show off for it. My husband still supported me in everything I did!
My world came crashing down during the birth of my second baby. I have flashbacks to those few moments. Trauma doesn’t have to meet a certain definition to be traumatic to someone. All it has to do is trigger the fight or flight sensation, and especially if you can’t respond with either one of those actions the trauma will take a huge toll  on you. I have precipitous labor. Meaning without warning and very sudden. I was in a hospital, they had induced labor because the day before she had been breech and I was schedule for a C-section. She had turned and they wanted to push the labor forward so she didn’t turn again. After about 8 hours into it, on epidural, my water broke. And my body took over. My control was ripped from my brain and my body wanted to expel the baby as fast as possible. I felt like I was being ripped in half. I felt pure and simple terror. Someone was going to die, I was sure of it. If it wasn’t me than the baby was. It only took two minutes from when my water broke. It seems like my screams lasted longer. I know I wasn’t fully dilated because they had just checked me 30 minutes before and I was only 5 centimeters. As soon as she was out I blacked out for a split second, and then became aware that my baby was lying on the birthing bed, not crying. Terror hit all over again. I couldn’t get the strength to reach for her. I think I was sobbing, so scared. While I was struggling to regain strength an orderly walked in to deliver blankets and saw the scene. I don’t know if he said anything but I did see panic in his eyes as he gaped for a second and then darted out the door calling for help. A few moments later a nurse dashed into the room, panicked as well. She got the baby. The baby was breathing. Everything was a daze after that. A lot of tests happened and then they laid her on my chest, while I struggled to wrap my arms around her. I think we stayed in the hospital a day longer than usual. She wasn’t preemie but was very small, we had to put her in preemie clothes and diapers and they still hung a bit on her. If she hadn’t been that small I would have suffered severe internal damage.
She is a fussy baby. Always has to be held, mostly by daddy, and is very colicky. I am stressed, exhausted, feeling like a failure because my milk again won’t come in. I cry a lot and I hide a lot. I keep trying to put on a happy face, for my family, but something is going on in my head. I had post partum depression with my first. So its not unexpected it would happen again. It feels different. More ominous. A month or so goes by at home and I get worse. I put all my energy is getting physically fit again, trying to outrun the demons in my head. Within two months I am back to my pre-pregnancy weight, but I haven’t outrun the demons. They are getting stronger. Its not someone else’s voice I hear. It is my own. My inner self telling me I have doomed these innocent children to the torture that is called life. That they are going to suffer in pain for the rest of their lives and then they will die and their souls will be tossed into oblivion. That by me choosing to have children I have intentionally caused their pain and suffering. I placed a death sentence on them. Then the visual hallucinations started. Visions of me suffocating my infant. I had just enough logic to understand that this was not real and that there was something very wrong now. I collapsed in the middle of the night, in the middle of my living begging my husband to call my mom. She came and held me, for a long time. They promised that this wasn’t real. That my brain was hurting me and that it was telling me horrible lies. They promised the my children were not doomed, that they were not going to suffer, that they would live lives with happiness and sadness in them but that they were not doomed. My family is Christian, they assured me that my children were not doomed to die and that their souls were not going to oblivion. I couldn’t believe any of this at this point. My mind had been poisoned by a long, slow trickle. I told them I wanted help, I didn’t want to live like this. My mom took the girls that night, not to keep them safe, but to keep me safe, to keep me from torturing myself, and to let me try to rest. I don’t remember if in the following days I went to the hospital or not. My memory is vague after that night. I know I saw a psychiatrist in the next couple days who diagnosed me with the little known post partum psychosis. I was now just like Andrea Yates. I was a monster. They put me on medications, I can’t possibly remember which ones now. They encouraged me to find a therapist. And told me to take is very slow and easy, to not let myself get overwhelmed or exhausted, that those would certainly trigger the hallucinations again. In the next months I tried going back to work, had my kids with me at certain times but they spent more and more time with their grandparents. I tried, I really did, but I was failing. I wasn’t getting better. Several months down the line the doctor said this was no longer post partum psychosis. They threw out a new diagnosis. Bipolar Type II. The real war began.