But you do matter. I matter. We matter.

When writing a facebook status likening my struggle with intestinal endometriosis to an infamously violent creepypasta focusing on insomnia, I realized, truly, how much damage this is doing to me. To keep consistent with unnecessary (and probably misleading tbh) technicalities, it isn’t the endometriosis itself. It’s the wreckage it has caused. I have to make a choice every morning not to go into the darkness again. Every day, I have to be extremely aware and actively ensure that I don’t celebrate my weight loss or allow others to, because I have to remind myself that a number on the scale is not tied to the value of my life because I used to tie it to the value of my self, and most (including many of the doctors I have seen) think that I am “still too overweight” to feel the effects of malnourishment, and that I should be celebrating the weight loss, in turn then celebrating the fasting mandated by my wrecked intestines; that I should ignore the swelling from my body trying desperately to hold onto every drop of water it has magically been able to keep down during the past week. I am often dizzy, lightheaded, physically unstable when I do get to be mobile, and my function is impaired. At my own doctors’ advice, I have to every so often go to the ER to get IV fluids to maintain enough hydration to survive. Last time I went they told me to discuss a feeding tube with my PCP.

 

I stil have not received any effective treatment and have little hope I will ever get it.

 

Because of this, I constantly have to reaffirm my value as a human being, the value of my wellness, and the value of my life, because these things do not seem to matter to the people whose licenses seem to be respected more than my health; who have a license that people agree is powerful enough to say to my face that I am untreatable, because my pain is my fault, or my pain is psychogenic, or that I am neglecting myself because I won’t take the diverse collection of unnecessary psychotropics every day anymore that gave me tremors and worsened my real medical condition — but on record helped seem to constantly erase any credibility I may have ever had.

 

They have put me on so many psychotropics. When it didn’t work, they upped it until they legally could not (in most cases, anyway), and when increasing the dosage was no longer possible, they added more or changed to other psychotropics. The psychotropics didn’t touch my real pain because even in the case of most clear-cut mental illnesses, they don’t reah that core. So for me, who has C-PTSD and inestinal endometriosis, meds like Mellaril, Ritalin, Adderal, Haldol, Prolixin, and Risperdal did not help. They could not take the nightmares away, let alone the 10 day debilitating periods or the chronic pain which helped to isolate me as a child. Even Welbutrin XL, Prozac, Klonopin, Remeron, Clonodine, medicines intended to help treat depression, anxiety, and insomnia did nothing to heal me. These lists don’t cover half of the pills prescribed to me by uninvested doctors, and the years I was in the psychiatric wards most often were the same years I was often prescribed to take more than a dozen pills a day.

Continue reading “But you do matter. I matter. We matter.”

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”

Finding strength in your “weakness”

Reducing the impact of a vice isn’t necessarily trying to eliminate it. We will probably always have at least a fraction of our childhood vices still in us. Instead, try to funnel it into something good, utilizing it differently to accentuate its potentially positive reciprocal.

Couldn’t sleep at all due to the endo pain but was able to fill eight pages in a random notebook with this before typing it up. Help me sleep. Please.

I have long maintained that many beautiful concepts have deep tragedies to them. I see, acknowledge, and appreciate the oft-ignored nooks and crannies of experience and of being, a strong witness to their darknesses, shadows, and the gems enveloped (or even later produced) by them. I’ve come to believe it’s part of the INFJ type, and perhaps among the reasons we are nicknamed “the Mystic” is because we are likelier to be privvy to the otherwise lost or forgotten gifts of deeper universal significance.

My personal outlook on this has taken a long time to develop. Aspect I share with others that I saw as valuable, beautiful, or forgiveable in them were not in myself. I couldn’t see my victories — small or big — as events or processes worth celebrating but congratulated others for things they themselves reportedly saw as minute gestures. Much of this stemmed from self-loathing, feelings of worthlessness and futility. I had higher expectations for myself than I had for those around me, marginally so. But I criticized my efforts, thoughts, feelings, and conduct in ways completely counterintuitive and ultimately counterproductive to growth. I was angry at myself for imagined attributes I didn’t really have or attributes I associated to others in completely inaccurate ways. I think it’s pretty normal for children and younger adolescents to make faulty connections like this. Normal but unhealthy and sadly, I’d say unhealthy habits, thought processes, self talk, etc are all extremely normal, even in adults.

Having C-PTSD and growing up with abuse from pretty much all directions however, I took those faulty connections to some pretty devastating extremes. (Trigger warning: Disordered thoughts – eating disorder + c-ptsd & casual descriptions of SI behaviors)

Continue reading “Finding strength in your “weakness””

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”