My Endo Story, Pt II: Surgery was a success. Now, to live life.

Knowing your real worth, understanding you have a right to receive informed and compassionate care, and actively learning about and speaking up about your illness(es) and essential rights are integral to your survival.

And not just yours.

Note: Some of the links go to specific cases and while my intention is compassionate, I understand if you want the links to you or your loved ones’ cases removed and will do so at your request.

On the 25 of July, 2018, I under went a laparoscopy accompanied by excision surgery. I had a complete hysterectomy, meaning that while thankfully both ovaries were kept, everything else was removed – the tubes, cervix, and uterus. This was done because adenomyosis was confirmed, as well as endometriosis, which can cause ovarian cancer[1] in the long-term. Most ovarian cancer, the name being a misnomer (as the term for many women’s issues are due to lack of research and concern), at the root, has been shown to begin in the tubes.[2] Consensus is that taking the ovaries create unnecessary risks, and since endometriosis grows its own estrogen — something most gynecologists don’t know (and often don’t care to find out) — the ovaries have really nothing to do with its recurrence[3] – any endo (a single cell) that is left is what causes symptomatic recurrence. The lead surgeon, among the best in the world, assured me that all of the endo was almost definitely excised. I believe it. Because since the surgery, the only pain and discomfort I have had can be traced to normal post-op reactions. Up until surgery, I was having many endometriosis symptoms (not just pain) constantly — that means without interruption, not just monthly, weekly or daily — for almost a year. Prior to that year, I still was experiencing three or more symptoms at any given time since I was, at the oldest, five years old. There are a ton of symptoms that widely vary, including with which type, but given repeated sexual trauma as a toddler, it is likely that this is why I started showing symptoms prior to puberty. My case substantially supports part of Meyer’s theory over the two others in terms of the pathogenesis of the disease.[5]

 

My appendix was removed also due to endometrial involvement, and as I suspected (because I could literally feel it internally), there was a concentration of endometriosis under my left ovary.

Luckily, I did not have to have a bowel resection and only stayed one night in the hospital.

Medically cleared recovery after a surgery like this generally requires a full two months. Until mid-September, I am medically advised not to lift more than 10 lbs (much to my furbaby Oskar’s dismay – or rather mine, I guess – he tolerates being picked up but isn’t a huge fan of it), am discouraged to work my core a lot, and of course, cardio like HIIT, jumprope, and running are out of the question right now. Due to the removal of my cervix, I can’t swim, either, (which sucks, but it’s a small price to pay for my intestines not falling out or not getting infections). Thanks to medicine, I got through a clinic independent of the horror show network of doctors and hospitals I’d been previously saddled with, and I was starting to get into yoga, which I plan to return to with modifications. Thankfully, I rarely need the medicine – or any – now, although not completely (yet). I am continuing to take certain supplements, as even though it was very likely the endo depleting my vitamin B[6] and D3[7] stores, those are crucial for well-being, and it will take some time anyway for me to become nutritionally whole. I will also finish my bottle of turmeric (and may continue taking this supplement as well) and while I won’t be extremely restrictive with my diet, I am going to continue deeply limiting my refined sugar intake (a known inflammatory) and dairy. The doctor, while a lead surgeon in this field, is fallible like the rest of us, and being cautious will also slow the chance of recurrence if there is any endo left. Refined sugar is also, simply, not healthy regardless, and the benefit vs cost of dairy is arguable, not just in terms of individual health but global and environmental, too. Beef is another thing I’m not keen on consuming any more of, for both reasons as well.[8] However, as noted in the important sequel to the aforementioned article, one should also note that certain alternatives  (e.g. milk from almonds which uses a ton of water and land or milk from cashews which can easily burn – and mar – the hands of workers[9]) or strict veganism aren’t necessarily the best options, either.[10]

Continue reading “My Endo Story, Pt II: Surgery was a success. Now, to live life.”

On body positivity & awareness

When someone ties their physical form to their integrity or character value, that is when they have an increased likelihood of intentionally harming their body, and devastatingly, society encourages this connection all the time. You can want to lose weight to improve your health – or gain weight to improve your health, build muscle to improve your health, etc. But when you do it in pursuit of becoming a person of “value” or increasing your worth as a human being, that is when you are really hurt inside, and you need to begin healing yourself.

I am 162 lbs now, when I was ~195 in mid-April. While to most people this sounds like a cause for celebration because society sees fat as so “unattractive” (and yes, unhealthy but that’s often secondary to the main message and for awful reasons), losing this much so soon is not healthy either, especially because of how I lost it – being unable to properly take in and digest food. I want to take this time to especially send my love to those with illnesses – of any kind, whether it be endometriosis, cancer, Chron’s, EDNOS, etc – who are overweight, lose weight then because of the illness they’re suffering from, only to then get congratulated on their weight loss when they actually feel like they are (or actually are) dying inside. It is devaluing, dehumanizing, and invalidating, and for those with eating disorders and associated thoughts and behaviors, those experiences significantly encourage the chance of related fatality. That being said, eating disorders have reportedly the highest fatality rate of any mental illness, and there are plenty of people who start out as “heavy” before literally overexercising, starving, or purging (including vomiting and/or excessive laxative use) themselves to death.

 

Note: Because of the tragic self-violence of disordered eating, I refuse to more “gracefully” word that.

 

While many people who have lost a great deal of weight are happy to have lost it, feel good about having lost it, and have lost it under medical supervision and/or through a healthy way, please always consider the possible ramifications of telling someone “Wow, you look so good after all that weight loss!” or tbh, commenting on people’s weights at all.

 

For me, today someone close to me commented in a way that was actually very considerate and was not at all hurtful to me (but validating instead). She had noticed the rapid weight loss and was concerned for me, knowing why it has been happening, and she treated it compassionately.

 

But I can’t tell you how many people have seen me in the past month and told me, “Wow, you look great now! Look at how much weight you’ve lost!” to which I must stifle a frustrated “I’ve lost weight because my body literally won’t allow me to eat and drink due to medical problems and I am so hungry and thirsty and miserable.”

 

The fact that I haven’t been able to leave the house much and so I haven’t seen many people is a true testament to how painfully common this response is.

Continue reading “On body positivity & awareness”

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”

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.”

Without faith

It is late, and snow is falling. It is very light, and it won’t stick anyway, but neighbors have bought their emergency milk and bread regardless. It’s not like the north where we were buried in snowfall, and I still had to walk to school. I remember the real cold, the brisk and bitter wind, the icicles hanging from the sad-looking houses. I miss winter. I miss the fall there. But I do not miss that town.

 

I’ve written about many people in my life, and some I’ve written about many times. I’ve written lives over, dreams over, nightmares over. I’ve rewritten songs to beats I could not keep and have cried over a thousand one too many melodies. Too many lyrics. Too many words. Too many thoughts. Millions. Millennia, all swimming in me, as if this moment will never matter, but it still hurts.

 

There are shadows I grasp at. There are apparitions too heavy to hold. I am a bearer of many observations, and I see things other people have not, cannot, and will never see. I hear radio interference, hissing voices bullying the airwaves. I pick up on pain you never knew you had.

Continue reading “Without faith”

The flaw.

Fifteen years of therapy, eleven hospitalizations, in and out of partial programs, so many different services and different therapies (DBT, CBT, talk, etc.) Hell, I’ve even undergone ECT, (electroconvulsive therapy), and have had MRI, CT scans, EEGs, test after test, been on medication after medication, dose after dose, and I am sitting here on my couch, full of weeping lethargy but sleeplessness; a restless, nauseated anxiety and hunger for cessation and quiet. I feel so sad and so broken. Beyond tired, beyond depressed, beyond reparation. I know myself well. Years of [self-]interrogation, years of being poked and prodded by doctors, neurologists, psychiatrists, psychotherapists, counselors, and my own reflection have given me near crystalline photographs of my subconscious. I am betting I know myself more than most people know themselves. I am betting I understand myself more than most people understand themselves. And I am sure as hell that at this point, if I can be saved, only I can do it; and that, that is torture. 

Continue reading “The flaw.”