Challenging misconceptions about endometriosis

This (endometriosis) is what has kept me so absent from this blog. It is time I talk about it in-depth. I am creating a fundraiser to help pay for my treatment. Please read, share, and donate if you can, especially if you want to see this blog get going again. Your support will help greatly in making that happen. Thank you so much.

Endometriosis is underdiagnosed, taking an average of six+ years for diagnosis but still affecting at least 1 in 10 women. This is due to bias and misunderstanding, esp from doctors. One big misunderstanding is that full hysterectomies, (removing uterus and ovaries), are a cure for endo. There is no cure, and they often heighten the risk for heart disease and cancer later in life for young women. Having endo in itself and not completely and correctly removing it has also shown to increase risk of breast and ovarian cancer. The longer it is the body, the likelier that will happen.

Endo grows its own estrogen and can grow on and spread into anywhere in the body (even the brain), and there are actual cases of men having it. That being said, you don’t need ovaries or a uterus to have endometriosis but often that’s all GYNs choose to focus on, using birth control, full hysterectomies, and other often ineffective methods in what often results in devastating attempts at managing endo.

Another misunderstanding is that only women of a certain age can develop it, but because it grows its own estrogen, it doesn’t require estrogen from ovaries to develop or worsen.

Birth control helps some, but for many, (including me), it only worsens things. Like severity and symptoms, treatment efficacy varies, but the one that is most consistently effective (when done correctly) is excision.

Excision as a treatment for endo came out in ’91, and even now, only ~150 GYNs out of the US’s ~160,000 are properly trained in it.

A damaging number of GYNs in the US still believe endo is caused directly by the uterus and/or ovaries and that it can always be seen through ultrasounds, MRIs, etc. Both are untrue. While some endo can show up on scans, it’s uncommon that it’s seen that way, even when severe. The only sure way to diagnose it is a laparoscopy.

Main (but not all) resources: CenterforEndo.com, Endofound.org, Nancy’s Nook Endometriosis Education (fb group run by licensed retired nurse, Nancy Peterson), Endometriosis Foundation of New York, and MyEndometriosisTeam.com.

My Endo Story

This (endometriosis) is what has kept me so absent from this blog. It is time I talk about it in-depth. I am creating a fundraiser to help pay for my treatment. Please read, share, and donate if you can, especially if you want to see this blog get going again. Your support will help greatly in making that happen. Thank you so much.

I have been experiencing 10+ symptoms of endometriosis since my first period at age 11 but have had these problems constantly shrugged off. Often the responses would be “periods are just naturally painful,” “these are regular girl problems,” etc. For this, I was often put on birth control but found it unhelpful. The Ortho Evra patch worsened my acne to extremes to the point where I have scars all over my face despite being careful to never touch my face with my hands, let alone scratch or pick. I often bled on pillows at night because the acne was so bad. In 2017, I was prescribed pure estradiol to combat hot flashes and lactation, but it seemed to just worsen my problems.

 

At 17, I had a full PTSD break when repressed memories that I had long been only somewhat aware of (but were silenced by non-professionals and medical and psychiatric professionals in childhood) brutally resurfaced. Because of this, many of my symptoms have been blamed on PTSD. I am aware there are definitely crossovers, but not all of my symptoms can be only PTSD related.

 

I have begged for a laparoscopy for at least three years, as I have been concerned about endometriosis. I had a tubal ligation at 21 because I knew with my hormonal problems (and the other problems they told me I had but never quite matched up), a pregnancy would send me totally over the edge and thought naively that perhaps maybe a tubal would help manage some of these problems as well.

Continue reading “My Endo Story”

The commitment to move forward & guilt vs shame

On accountability and the benefits of remorse, its surprising relationship (or lack thereof) to shame, and thoughts regarding working towards making a better future for ourselves by learning from our past.

Note: I use past tense for some people who are still currently in my life as I am going to eventually separate myself from them by legal means. This is a process so it takes time but want to clarify that emotionally, I am finally done letting my remaining toxic interpersonal relationships affect me. That being said, you can love someone still and know it is an unhealthy relationship and thus separate yourself from them. This will be another post at a later time but some notes on toxic interpersonal relationships here.

I have made many egregiously bad choices in my life. Among them are selfish and destructive choices I feel rightfully guilty over, such as the long-term and vile harassment of another person online, spurred by insecurity, both self-loathing and conceit, and self-righteousness. Another is blatantly dismissing the testimonial of an abuser’s little sister who had entrusted me with the secret that her older sister had broken her arm. This should not have remained a secret, and she and I both suffered for my denial of a very real problem. Out of more self-righteous thinking and behavior, I have meddled in situations that are not mine, further worsening some people’s circumstances in the process. While I would like to think they were purely well intentioned, I know my self-righteousness and own feelings of victimization have played a huge role in these particular actions, which is a major reason why my approaches to helping have sometimes caused further damage instead. Little works in crises when one is letting their inner (and still-hurting) child lead the way.

These wrongs that I committed hurt and even worse, potentially traumatized or helped traumatize others. My guilt here is justified and teaches me to not commit these sins again. Guilt is a positive emotion when it is about true heartfelt remorse. It is inspired by awareness, both of self and others, accountability, and is more central to ethical behavior than religion or law. The reason for this is that guilt is an internal measurement, and regardless of whether someone is more extroverted feeling, like me, and pays close attention to external rules and cues, or is more of an introverted feeler and pays close attention to internally formed rules and cues, guilt is what betters all of us socially when, like all discomfort and pain, we choose to grow from it.

For someone whose auxiliary function is extroverted feeling, (Fe), I learn too slowly. I effect change too slowly. And when I am unusually sick or stressed, I sometimes fall back on unhealthy and harmful behaviors, often again spurred by self-righteousness and unresolved feelings of victimization. I do recognize the urgent need to stop it, as those behaviors help no one and cause more hurt than resolution. I raise my voice, and when I say “raise my voice,” I mean I yell when I get angry.  And I become someone I myself can’t stand because I know I am causing hurt, and for reasons that at the end of the day, conflict with the behavior. I want people to listen and understand because when I yell, I feel hurt and ignored or misunderstood. But I know – when I am thinking rationally – all anyone does when they yell like that is hurt others and themselves. That’s why I have asked people to tell me when I am starting to raise my voice, so I can check myself and quiet myself down. It’s no one’s responsibility but mine, but I lose awareness, the sight of the goal (positive inter & intrapersonal development), and rationale in the heat of the moment and still need external reminders to calm the f*ck down. I have only gotten loud like this in the past three years. I’ve come to realize why but reasons for an unhealthy behavior do not and should not ever be confused with excuses. Still, unlearning this has been hard, and I have made only minimal progress since it was brought to my attention almost a year ago. Guilt, or perhaps the more specific term and meaning — remorse — is powerful and can greatly help to rectify bad behavior, but it is not the lone motivating force. I am making progress however and through identification and an implementation of coping skills, I hope to make this a past behavior more quickly.

Guilt vs shame

There is another feeling many people may relate closely to guilt – I used to too – but I caution strongly against making them so close. I can’t really remember where I first learned of the vital difference of meaning of these two words, but I know that actually proactively learning the difference took a long time even after. I do remember staring at the worksheet/handout in my early teens, trying to sift through events and circumstances in my head while utilizing the words’ very different meanings but having great difficulty in doing so. (Note: TRIGGER WARNING for disordered thoughts, including thoughts related to disordered eating and sexual trauma.) Continue reading “The commitment to move forward & guilt vs shame”

All we hurt when we hurt / The universal language

There is an importance to healing I cannot stress enough. Because I was so affected by traumatic abuse so early in childhood, my life, identity, and behavior have all largely been shaped by pain. Truthfully, I challenge the notion that even human beings from seemingly tamer backgrounds are not shaped largely in part by pain. When going over these sentences, I thought a more accurate description might be to add pronouns to these sentences — add perhaps “my” and “their” before “pain,” but that would only distance myself from the ultimate point. There are many layers to this post as there are many layers to every person. Layers vary and appear different. They can manifest differently, speak in different tongues, dress in different threads, dance with different motions, and while sentient beings all hurt in different ways to different severities and we express those agonies in different behaviors, perhaps the greatest irony of all is that the most universal element sentient beings share is what often isolates us most — pain.

Physical pain or severe physical discomfort, at their most banal, tell us something is “wrong.” A bone is broken, and it needs to heal, or a part of our body is exposed that should not be exposed — in the case of extreme cold or extreme heat or a wound — or that not enough blood is getting to our heart or that not enough oxygen is getting to our brain. Prolonged inactivity can also cause physical pain or severe physical discomfort because that in itself tells the body something is wrong and can make things go wrong further within the body. People struggling with their mental health often get caught in this cycle, because already we’re usually struggling with debilitating stressors (and chemistry).

It is important to note that there are medical conditions in which people have a total insensitivity to pain, however rare, but even in cases of extreme dissociation or Antisocial Personality Disorder (sociopathy and psychopathy) where emotional range can become limited, there is a current that makes us universally one, even if separating us in terms of our behavior or reactions to it: pain felt by the soul even if not always the body.

Continue reading “All we hurt when we hurt / The universal language”

Even if inspired by pain, inspire love – but always be inspired

Human beings are appalling and cruel and selfish and beautiful and flawed and complex and immature and I both hate and love that I love and value human beings so much. I can neither vilify or idolize, but I think the intensity of both my pain and love confuses others. Let me clarify this for you: When you are stalked — hunted as a wounded hare — a rabid dog at your heels and you hear their breath down your neck, you learn what a hungry, sick animal is capable of.

We may have our technological advances and our philosophical ideas, but we are still animals. We can be frightened, traumatized, sick, and weaponized too – and, moreover, as the human animal specifically, when frightened, traumatized, and/or sick, we have the unsurpassed ability to both consciously and subconsciously weaponize ourselves.

 

Sometimes, people seem very surprised by how moved I am by small acts of kindness. When I am vulnerable especially, I can often burst into tears at how moved I am. Reading articles on GoodNewsNetwork regularly evokes floods of “happy tears,” but also even in public, I’ve caught people off guard with sometimes perhaps too effusive of reactions towards small acts of kindness, even when not directed towards me.
Because while I am excruciatingly painfully aware of what people are capable of I am perhaps even more agonizingly aware of how much better people are capable of and yet are often uninspired to do.
That being said, I would like to end this post with a quote by Anne Frank, “How wonderful it is that no one has to wait, but can start right now to gradually change the world.”

I am neither the CEO on Prozac nor the ward of the state in the quiet room (updated 09 May, 2018)

I have always lived life feeling outcasted. In fact, it was such a problem that my mother specifically bought a book for me entitled Leo the Lop, in which a lop rabbit whose siblings have upright ears, sets out on a quest to define what “normal” really is. Throughout the course of the book, the charming illustrations depict Leo’s journey of self-discovery which ultimately ends with the absolutely dissatisfying conclusion that “normal is whatever you are.”

I liked rabbits, I understood Leo’s wishes, and I was five, so I enjoyed the book, but upon closing it and going into kindergarten the next day, I was viciously reminded that regardless of what Leo thought normal was, my classmates did not share the same conclusion.

I have never been normal, no matter what I have been.

I recognized at that time as I still do that the whole argument for “normalcy” is supposedly subjective, and that was the point of the book. There is no straight, wholly accurate definition for what “normal” really is, and as Morticia Addams so eloquently puts it, “What is normal for the spider is chaos for the fly.”

Abnormal Psychology

So, there being no true definition for “normal” in terms of human behavior and character what must “abnormal” mean in psychology, which is, by very definition, the study of human behavior and character? because it does exist. It does exist, and I do find it funny, considering that according to NAMI, 1 in 5 American adults experiences mental illness during a given year[1]. And let’s not play dumb. We know that’s what psychology means by “abnormal.” Forget that by mere observation, anyone aware enough can tell you healthy lifestyles — both physically and emotionally — are difficult to achieve and maintain even with the right circumstances, let alone being in positions in which you greatly lack resources or a support system. Forget that by mere observation, it is pretty obvious human beings are prone to unhappiness, dissatisfaction, and deteriorating health if not regularly maintained, regardless of whether or not they meet the criteria for a diagnosable illness. However, ask many professionals in the psychiatric industry, and they surreptitiously will tell you two conflicting things. First, out of their mouths will come, 1.) “There is no such thing as ‘normal,'” and then, throughout the course of treatment, you will start hearing the real message, which is, 2.) “But you are part of an abnormal statistic.”

“Diagnosing” the DSM

If you’ve been reading my blog for a while, you’ll probably know already that I am highly critical of psychiatry. I support psychiatry to an extent and am a strong believer that many people cannot get by without it. However, I am an extremely strong advocate for patient advocacy, therapies, and self-assessment and awareness. It is not a secret or at least should not be a secret that doctors are able to accept “legal” bribes from pharmaceutical companies[2]. This is a way of developing and testing drugs, but let’s also be clear that it is another way doctors make more money, and it is extremely controversial for what I feel are extremely obvious reasons.

It is not entirely the doctors, though. I feel many times, especially in psychiatry, prospective or even well-established patients will come in and expect not only a prescription but also expect a prescription to solve their problems. That being said, they will also expect a diagnosis. Antidepressants are often called “happy pills,” which is not only grossly misleading but also toxic. While depression is sometimes organically chemical and is definitely affected by chemicals, I feel depression is more often situational or circumstantial, due to things that are entirely fixable with the right resources and support that do not involve drugs. Those fixable things include diet, activity, interpersonal skills, intrapersonal skills, stress management, etc. I feel drug intervention can be necessary to break the cycle of depression which I’ve said before is often a Catch-22 even in circumstantial depression, but I feel psychiatrists overmedicate needlessly without offering much authentic help.

Overmedicate. And overdiagnose. Which leads back to the question, what have I been?

Childhood on Drugs: A [Super]Brief Psychiatric History Snapshot

When asked by any new psychiatrist, “What meds have you been on in the past?” I always have to laugh. Not just snicker but throw my head back and give a hearty, long-lasting, “you’ve gotta be kidding me, I hate this question” type of laugh. I usually follow with, “Do you want me start from my infancy or skip to when I was prescribed Ritalin for ADHD?”

“ADHD?”

Yes, ADHD.

It was the 1990s in the United States, and ADHD was the illness du jour. I was often restless and excitable and had difficulty focusing. Also, I was an insomniac. These symptoms were mistaken for the whole criteria of ADHD after I was taken to a psychiatrist who met me for 15 minutes and decided “what” I was. I have learned since that this was how I responded to change, disorder, and attachment as a child. My restlessness was part of a much bigger problem, involving compounded trauma.

I was about seven at this time and was often in the nurse’s office complaining of real headaches, stomachaches, and other aches and pains, as such with many children who have undergone or undergo trauma. I would stay in the office for quite a while, not wanting to go to class because of pain and discomfort that I realize now were manifestations of serious emotional distress and medically real, too, in the sense that I was already suffering symptoms of endometriosis.

I had other symptoms and contributing factors, as well, that the psychiatrist did not bother to explore. I was hypersensitive and felt chronically lonely, unheard, and felt the responsibility of everyone else’s happiness on my shoulders. I had terrible nightmares and feared men — not monsters — being under my bed.

I felt filthy and disconnected from my body and often felt I was being watched and often stayed up nights at a time, thinking that if I awoke I would be in a UFO and being dissected on a table. I let people throw rocks at me until I bruised because I thought that’s what it took to have friends. I suffered from chronic pain, particularly joint paint, and of course, I felt absolutely like a freak: in the classroom, in my town, in my country, in my home, everywhere. In fact, I started believing I wasn’t even human. But I was put on Ritalin, Concerta, Strattera, Adderal, because according to the psychiatrist, I was a seven year old psychiatric patient who had ADHD. My last diagnosis apart from PTSD was Schizoaffective Disorder which is in all fairness, similar, I suppose, to Bipolar disorder, which is difficult to differentiate from ADHD in children[4]. Funny thing is, Adderal, among many other stimulants, is known to exacerbate and even create psychosis[3].

**It turns out I am not alone with hallucinations or paranoid thinking in terms of PTSD only, and I do not match the necessary criteria for Schizoaffective Disorder. I suppose another “du jour diagnosis” by doctors who do not listen carefully. I have been off antipsychotics since October and have had minimal auditory hallucinations that ended completely by February.**

I have had to deal with other what I consider are “diagnoses du jour” that have only been combated through advocating for myself. I have had maybe the help of one or two professionals throughout my journey who have taken the time to try to understand me. For a lifelong history in treatment, that is grievously sad.

In the psychiatric profession, there may be no normal, but I suppose there is a way to be normally abnormal, and I am not it, either, even though they want me to be.

They’re not all wrong though, because I do think some people are.

It’s all about that Taste Bud Principle, even though it’s also not

While there are many people in mental illness advocacy, I constantly see two messages that are both extremely pervasive and probably extremely confusing to people who do not understand other people, regardless of whether those people are diagnosed with or have a mental illness, the same mental illness, or do not have any mental illness at all. Those two statements are: 1.) Do not pity us. We are the same as everybody else. 2.) Treat us more sensitively, because we struggle differently than you do.

Continue reading “I am neither the CEO on Prozac nor the ward of the state in the quiet room (updated 09 May, 2018)”

All my plants are dying.

The depression is finally lifting to a tolerable degree. I believe being more honest with myself and others about my health, values, and belief system has helped tremendously. Being authentic has always been very important to me, and when I am less than completely genuine about my identity, my energies become fragmented and chaotic. I start doubting myself, and I denounce my positive traits, most of which come with their own duality of darknesses: I have wisdom because of what I have experienced, and I am loving towards people because of what I have needed to experience and didn’t. I set high standards for myself and demand better of myself because of past sins and mistakes. I create extraordinary things from extraordinary pain. One cannot exist without the other. Yin to yang, I am made of major dualities and opposing intensities, much like my own life and what I have lived through.

But all my plants are dying.

I have not watered them in so long. I have a rose plant and a glass bowl of succulents. They were both beautiful in their prime, and the rose plant even blossomed again this autumn, providing us with two wonderfully scented yellow flowers. I was always very good about watering them. I am a nurturer. It’s in my nature to take care of living entities, whether they be human, feline, or photosynthetic in nature. I have forgotten to give my furbaby Oskar his medicine routinely, as he has a respiratory infection right now. I’ve been giving him enough medicine for it to be clearing up, but I could have helped him heal much faster had I kept up the routine. This depressive episode turned me into someone I’m not.

I guess that’s the modus operandi of mental illness: They try to kill you from the inside out.

Unlike personality disorders, other mental illnesses are less embedded in one’s behavior, character, and system of living. Personality disorders often are developed in response to trauma or something occurring in utero, (e.g. serotonin syndrome), with the addition of witnessing violence at a young age, (which one might call trauma also), etc. But it’s also true that standard mental illnesses affect your behavior, as well. Depression causes fatigue, loss of interest, social withdrawal, negativity, suicidality, all sorts of things that make one a different person than they were. Alternatively, mania causes a spike in energy, impulsivity, hyperfocusing, inflated confidence, and sometimes even dangerous delusions that lead to the person’s suicide.

All my plants are dying, my cat is still sick, all of my art supplies are scattered everywhere and have been untouched for months. I haven’t been making jewelry or papercrafting. I haven’t been shooting at all. I painted two paintings since I can’t even remember when. I have always been severely depressed, and I’ve been chronically suicidal for most of my life. I live with the heaviness and sadness every day of my life. I have learned to cope with it to some degree, but sometimes it gets so heavy, it is suffocating.

I’m going to water my plants and hope they forgive me and hope that Oskar’s next doses will help him kick the infection. I hope the plants overcome the odds and Oskar heals soon. Life is resilient. I’ve learned that. If it can fight, it will fight, whether it wins or loses. Oskar will be fine soon; I know that. He’s almost completely well. But here’s to hoping the plants have a chance. I hope within the next few posts, I can tell you

“My plants are alive again.”