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.”

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.”

How do you break the cycle?

Many mental illnesses, like many other chronic illnesses, are often cyclical. For those of you unfamiliar with the term, this means that at times the illness softens or even goes into a state of “remission,” in which the illness is not as prominent, invasive, difficult, and/or et cetera. This is especially true with mood disorders, such as depression or bipolar disorder. I think a full “remission” is rare, but I’ve known people who have reportedly (or rather, self-reportedly) gone for years without symptoms who end up hospitalized after an episode returns. Still, many illnesses are cyclicallike fibromyalgia for example.

The uni-cycle from hell

Continue reading “How do you break the cycle?”

5 mental health myths frequently popularized by mental wellness culture

I’m sorry I haven’t posted in so many months. I need to come back to this blog, because it really helps me to write in it. I’ve been trying to figure out what to write for a few days now and thought this is a good a topic as any. I’ve been seeing some things related to these anyway that brought this to mind, so I thought I’d share. Feel free to leave your thoughts as well.

5 mental health myths frequently popularized by mental wellness culture

1. Nobody will love you until you love yourself.

This is a common phrase we hear in hospitals, self-esteem workshops, therapy, etc. It is both demeaning and inaccurate, perpetuating a cycle of self-hatred and loneliness that stems from feeling unloved and unwanted. While confidence does win relationship successes, romantic, platonic, and otherwise, never let anyone make you feel you are unlovable just because you feel unloveable. At my lowest dips in my self-esteem, I’ve had the best relationships I’ve ever had with people who have helped me pull through those tough times, and I have met them during periods of low confidence as well. While confidence certainly does make a person more attractive, more magnetic, that is not a lone trait that people look for. People also look for many other qualities, and it varies by person to person. I have not had a lot of successful relationships, but the strong bridges I have built are made of iron.

2. You can’t love anybody until you love yourself.

This is another, albeit less common, phrase that circulates around mental wellness culture. While I do think it is unwise and ultimately impossible to try to take care of other people when you cannot take care of yourself, I firmly believe you can love other people and still have poor self-esteem. Our self-worth affects our view of the world, sure, and it does color our relationships and our opinions of others’ motives, etc. But I know people — myself included — who feel great love for others while not feeling great love for themselves.

3. You’ll feel better if you talk about it.

This one I have to be careful with, because yes, it works for a lot of people. It’s why talk therapy is a thing. It’s why many people journal, why support groups exist, etc. But like all coping skills, every one of them works differently for everybody, and not all of them actually work effectively for anybody. There are endless ways to cope with something, both positively or negatively. Taking long showers, painting, exercising, making lists and plans are some of the ways I cope with my stress. I also talk about it. I talk about it a lot. Talking about it, however, does not help me, and that is why I have had therapy for 15 years and it has, thus far, been fairly useless to me.

Don’t get me wrong. I’ve learned a lot. As you can see from this blog, I use a lot of knowledge gained “in the system” and make references and terms often used “in the system.” But much of what I’ve gained has been gained on my own, in practice, or through hospitalizations. But in therapy, I talk. I “open up.” I open up to my therapist, to my friends, to my family. And I only feel better once we get sidetracked in the conversation. Talking about my problems is not helpful to me. If there are solutions, talking about those can be, but let’s face it, life doesn’t always have solutions for the kinds of problems we face. Everyday life is hard. Stressors come up that aren’t always “fixable” and are ongoing; permanent. You can’t really talk about those things without going half-mad and just falling down the rabbit hole with your own negativity. Sometimes, it’s better to focus on other things. Sometimes, it’s better to focus on better conversations.

4. The Law of Attraction

Some people might really want to fight me on this one, because self-help books like The Secret et cetera have really “changed” people’s lives, I guess. Many people claim the Law of Attraction is nothing short of “miraculous,” and once they began to “adhere” to it, their lives just “fell into place.” I see the value in it; I do. And I think that, largely, it does make a lot of sense. Like #1, in which confidence or a healthy attitude would attract healthy relationships, the Law of Attraction states that positive energy attracts positive things or more positive energy and conversely, negative energy attracts negative things or more negative energy. Yes, it makes sense. Many people who are pessimistic and expect the worst of people will get the worst in people. This is for a few reasons. The first is that they already see the worst in people, and the second reason, one could argue, is something like the Law of Attraction. But the Law of Attraction isn’t a law. It is a guideline. It is a loose philosophy, an idea which improves your life but does not necessarily rule your life.

Like I explained with #1, I’ve been in bad situations and have been met with overwhelming positive energy and people before. The world doesn’t work on rules and statutes. It really doesn’t. It’s a bit of a free-for-all; kind of chaotic. A lot of it is about luck. It’s unfortunate, but it’s true. A lot of it, too, is what you have in you, but a lot of it is about luck. I’ve encountered some very beautiful people and some very ugly people at different stages of my life. It hasn’t really mattered. You want to be positive; you should be positive, of course. But just because you aren’t doesn’t mean you earn negative things. Just because you feel overwhelmingly depressed doesn’t mean you deserve to be mistreated or that you will be. You are likelier to be in an unstable relationship than someone who is healthy and confident, because someone who is healthy and confident is less likely to take someone else’s crap, but that’s because they’re healthy and confident, not because their energy is repelling the wrong person. Please remember that.

At 17, I was told in a partial hospitalization program, after watching The Secret for something like fourteen days in a row that every trauma beyond my prepubescence was my fault because I was so depressed. I believed it for a long time, because I had been indoctrinated with this inane idea that because I had bad thoughts and bad feelings, was bad, and I deserved bad things. Don’t do that to yourself, and don’t let anybody do that to you.

5. The only love you should need is your own.

Again, this is one I want to be careful on, because there’s a good reason this one is circulated. Ideally, this is true. It’s important to love yourself, regardless of whether or not you are loved by anyone else. You want to get there someday.  But I believe some people are just not this independent, or that they are more people-oriented than others. Some people need extra support, whether they love themselves or not. Another person’s love cannot fix you. But I’ve learned over the years that sometimes external love is necessary to help heal someone, because sometimes you just don’t have enough on your own. I’m not talking about romantic love necessarily. Support from a friend or a family member can be counted, too. I’ve been helped a lot from friends and family in the past. But I know I would have never made it this far on my own. I need love from other people. Ultimately, I know I need love from myself. That is what will make me happy. But love from other people is what has kept me alive. I don’t think everybody needs it. I think many people are strong enough on their own. But some people aren’t. I’m not. And that is okay. I think it’s okay to forgive oneself for that. It’s important to forgive oneself for that. And I think it’s important to forgive someone else for that, and that is something the mental wellness culture does not really do. It is so concerned with self-reliance that it makes needing support and needing love seem too much like dependence when there is definitely a line between them.

So what are your thoughts? Do you agree or disagree? What are some things you’ve faced that you feel are myths? Please share in the comments below.