I’m not a part of anyone’s world. And that has to be okay.

Among all the Disney VHSs that I wore out as a kid, there was one that I only remember seeing later in my childhood, loved, but never owned. My mother disliked the premise, so we never had it in the house, but seeing it on television later on was something that I felt echoed some of my struggles. One song from it, in particular: “Part of Your World” from The Little Mermaid echoed the dissonance between myself and the human world. For a long time, I believed I was less than human, because that is how I made sense of how I was treated. I was consistently excluded on merits I didn’t understand. I know now part of it is because I am a very different kind of person, comprised of many worlds but not accepted as a part of them due to only partial immersions.

I’m giving a few examples here but these are by far not the only ones. One of my favorite TV shows, that I’m sure I’ve mentioned here before, is Buffy the Vampire Slayer. Buffy, whom I very much relate to, is marked, like vampires, by having to walk two worlds (human and demon) and not be part of either but having composites of each. It seems perhaps like a silly reference, but when adapted into a less dichotomous way of thinking, it’s another media reference applicable to much of how I feel.

Trigger warning for mentions of sexual violence and associated feelings as well as other sensitive material.

Continue reading “I’m not a part of anyone’s world. And that has to be okay.”

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.”

Authenticity: Its meaning & benefit

Authenticity may hurt you, but major parts of it are accountability and self-knowledge, both of which are vital to personal, individual healing. And contributing to healing beyond your own universe, too.

“Knowing yourself is the beginning of all wisdom.”

Paraphrased from Aristotle, this concept has been key, above all others, to my personal development. For me, it is not just about identifying what you do and why you do it, but also what you can do, as an individual, to strengthen positive behaviors and reduce negative ones. Self-knowledge is not armor; in fact, it is far from it. It is not a shield or a helmet. It is calcium to edify our bones. Its purpose is to grow and strengthen in that growth; to identify and take accountability; to have compassion and respect for ourselves and not enable our vices in pursuit of doing so. True self-knowledge is the first tool in countering stunting and regression. I read an article once claiming that “know thyself” is a dangerous maxim because it indicates some kind of permanence, or “being stuck.” The article implied that this could happen because if a person has identified their values and circumstances change that contend with those values, that person will refuse to adapt because it “feels unlike” their interpretation of themselves. That is not self-knowledge. Our values, circumstances, feelings, and ideas are impermanent. As human beings, we are the most adaptable animal in the world. We are nearly limitless and have evolved for ultimate survival, even in our clawless, fangless bodies. It then makes sense that the human mind, the most significant key to our advancement, is also the most significant to our downfall.

Continue reading “Authenticity: Its meaning & benefit”

“Freedom is what you do with what has been done to you.” – Jean-Paul Sartre

I haven’t been hiding that the disease I am trying to manage right now (endometriosis) is both horrific and all-consuming and that I feel that is in fact quite literally killing me. I have had near-death experiences before and in April I did die for a time, or at least was closest to death than I ever was, being in a coma and consciously having to make the choice to stay alive. I didn’t choose to live because I felt I had to tie up loose ends. I chose to live because amindst all of the darkness, I was able to find hope that I could get effective treatment and live a life I wanted to live. That treatment is still far away even with the help I’ve been receiving and am very grateful for, and I may not get it before my insides are scarred beyond functioning or I develop serious heart problems[1] or cancer.[2] (That being said, I know I am being extremely annoying about this, but I am literally pleading for my life and trying to get the information out there to save others’ as well.) There are a lot of things I want to do and can’t, but I’m focused right now (and trying to stay focused) on what I can do.
Blogging has been helping me deal with this along with other issues, and I intend to start vlogging about endometriosis and my case specifically very soon. I will not let my suffering be meaningless when I have learned and experienced so much that can contribute to others getting help sooner.
Part of living the life I want to live is becoming who I want to be. I have many limitations right now of many varieties, but I can choose to continue working on myself, regardless of how little time I may or may not have left. Truthfully, I think that is the most honest motivation for this blog in particular. Helping others and advocacy are both integral to my soul’s survival, a huge part of who I want to become, and while this blog does not have a big reach and has probably not bettered anyone else’s life, it has helped me greatly, I have learned better to self-advocate, and so my entries here have bettered my own life, all of which have helped equip me with better skills and ability to reach out to others more effectively elsewhere.
Recovery is not a destination but a process.
This is, indeed, truly a recovery blog for me.
That being said, there are things I talk about here that I feel I need myself to embrace more fully. We are all hypocrites in one aspect of our lives or another, whether always or in certain instances, but hypocrisy is something I have been working very hard for years to get out of my system. I know it will never be 100% out. I am human. I am fallible. But I am human, which means I also have a great capacity to change and take charge of my own behavior.

Continue reading ““Freedom is what you do with what has been done to you.” – Jean-Paul Sartre”

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””