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.”

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.”

The Why (updated 12 May, 2018)

Update 18/12/16 20:03: My friend is alive and okay. 🙂

It is 02:14. I cannot sleep. There is noise in my head and at my fingertips. Voices in different tongues, languages that cannot speak of happiness, where “happiness” has no dictionary wedge, no page, no meaning. I may have lost a friend tonight. So this will be about things I should have told him.

For those of you who have been reading my blog, you know that I used to suffer from chronic suicidality. I used to tell my therapists I have four “moods:” 1. mildly suicidal, 2. moderately suicidal, 3. severely suicidal, and 4. urgently suicidal. #4 is hospitalization. #2 was the most typical on an average day until April 2016.

Even so, every day, I have to make the choice to survive. If you’re familiar with mental illness (whether from chronic pain, trauma, both, or otherwise), this may ring too true. I say “too” because this is a reality many of us must brace ourselves for each night we fall asleep. We have to say, “If I wake up tomorrow, I must continue the fight.” How hard it is to sleep when that echoes in you! It is even harder to get out of bed and face the day when you’re disarmed for the battle.

That’s why the word “why” and its answer are so important.

What is purpose?

Continue reading “The Why (updated 12 May, 2018)”

An Open Letter.

Hello, traumas.

Let me begin simply by saying you are no longer welcome here.

Your abusers’ language and actions are motivated by a voracious hunger for control, lack of conscience and/or lack of empathy, and deep insecurity. Thus, with me having recognized this, your abusers’ behavior will no longer find my empathy, fear, or obedience. I am not yours to do with what you want. I am not yours to damage.

I am simply not yours.

The people whom you’ve saddled me with have all had problems; it’s true. No one would try to destroy someone else out of a healthful self-love. You’ve sent me ruins of trauma. You’ve sent me shells of people. You’ve sent me killers, rapists, pedophiles, torturers, and bone-breakers. You’ve sent them my way and promised me to them as a way out. But you must understand, traumas, you don’t have that right, and you don’t have my permission.

Let’s get some things straight.

The way I have reacted to you has not been free from guilt or scandal. I have hurt people myself. I have acted impulsively and have even tried to exact revenge–a laughable concept, by the way, since revenge still puts me under your control even though I am tied to it by my own responsibility. I’ve walked down that path and have jumped that bridge. You cannot kill me through me.

That being said, I have attempted suicide in your wake–many times. I have been hospitalized in wards and hospitals both medical and psychiatric in your wake. Many times. I have slit my wrists, overdosed, tried to drown, tried so suffocate, tried to choke myself to death because of how I’ve felt with you.

And consider this:

I am still alive.

There is a girl whose birthday is in a few days. She just found me on facebook, although I’ve only had a facebook under my real name for… less than a month? You remember her, traumas; I know you do. She groomed me well as a kid and early teen: isolating me, hounding me, controlling me, manipulating me, breaking me day in and day out for years. She may have been abused. I do not know. At this point, I do not care. She has had a hard life, I know, and at this point, I do not care. I cannot care. I must be indifferent, traumas, because you will understand this:

Nobody owns me.

I care about the people who could become like her, sure. If I had different neurochemistry and a different situation, I could easily be like her. We all could. But I don’t pity her, and I certainly do not owe her empathy. I do not wish her ill. I no longer wish for her to understand what she has done. She will never understand it, just like I’ve learned I will never understand her. But I don’t cater to or cower beneath these caustic crowds anymore. I don’t feed the snakes, as I’ve learned a lioness needs no pride but her own.

I have a birthday coming up soon, too.

My twenty-fourth is the first birthday I am excited for. One of hopefully many more.

So, goodbye, traumas.

You’ve granted me wisdom and understanding I sometimes wish I never had but am better for. I am still learning; I am always learning. You come back; I come back harder.

You aren’t going to win.

 

 

 

 

For the Qs: Why? Why me? Why this?

Pain at its roots is neither test nor punishment. It is trial we are guaranteed simply by existing. Nothing greater than ourselves doles it out. Nothing greater than ourselves cares if we overcome it–so we must care ourselves if we do.

It varies by degrees and duration. It’s a war sometimes; an onslaught. Sometimes it’s an inconvenience. Sometimes it’s something in between and it exists for no other reason than “we exist.” We live. It is not the price of living, as pain in itself bears its own independent value. It just “is.” It exists with us. It offers opportunity, change, growth, and new perspectives. That alone makes us better than our suicidal thinking and our suicidal urges. Because there’s always a part of our pain that challenges us to make ourselves better. We just have to find it.

The puzzle is not pain. We may always be in pain while we live, discrete pain or concrete or conspicuous or not. The puzzle is the reaction. The puzzle is the loss and gain and how the pain is handled. Stop asking yourself, “Why?” and “Why me?” and “Why this?” There is no good reason except that it is proof we are alive. Don’t think too much on it–for, really, what better reason would there be than that?

Questions that are important to ask, questions with more productive and concrete answers, are as follows:

1. What can my pain teach me?

2. How can I make peace with my pain? and

3. How can my pain help me grow?

This is how healing begins.

Love always,

V.

For the Q: What are my coping skills?

When I was a kid and growing up, I often seemed to almost drown in this question. They’ll ask you in therapy or hospitals, “What are your coping skills?” “How do you cope?” and for me, the answers were ambiguous and nearly unreachable.

“I write,” I’d say, “but it hurts to write. I love art, but art hurts.”

I focused on this one subject so much: Something I value above most other things–creative expression–and how much it hurts to commit to but how much it hurts not to. Art and I have always had a tumultuous relationship. It has saved a lot of people, but truthfully it has only complicated and added weight to my life. It’s okay. I love it. And I feel great sacrifice often comes with great commitments.

So what are my coping skills? Some hospitals will give you print-outs of suggestions that I often found sometimes silly or counterintuitive–holding ice cubes in your hand or snapping rubber bands against your wrist, (which in itself is still self-harm.) I’ve known from an early age that different things work for different people, but nothing seemed to work at me.

I cried a lot. I still cry a lot. Many times it’s worse than crying. It’s that shrieking that accompanies a lot of internal violence and darkness, throwing oneself at a wall and the floor. But crying doesn’t help much, either. In fact it literally physically hurts and ties me too tightly with my pain.

But I have become much more self aware since I was 7, 12, 15, et cetera and have realized I’ve had a really high standard for coping skills. Many people, even professionals, like to act as if coping skills are “it.” They’re “survival things;” “things that make you feel better.” I didn’t really understand this concept, because I felt nothing really helped and that I’d just have to wade the pain out.

Then I started looking at three major elements:

1.) What are my instinctual responses to negative feelings and/or situations and why?
2.) What is something healthful I should try? and probably most helpfully:
3.) Is what I’m doing now something that will bring negative repercussions?

I struggled with self-hatred for a long time and still sometimes do–or, nowadays, low self-worth I guess. Self-hatred is something I feel I had to absolutely shut down some years ago, and I’ve worked really hard to do that. But, speaking of it then, many of my urges to were to act on negative or harmful behaviors that more often than not had negative consequences and added more stress. E.g. although self-harm made me feel calmer, it was something I was obligated to report to my doctor or my mother would see it or I’d have to wear long sleeves in summer to cover it up or et cetera, and truthfully, just pragmatically, it was more trouble than it was worth.

Let’s look at #2 now. We’ve more or less covered #1 and #3, so two is, again: “What is something healthful I should try?” Trying is a key thing in not just therapy but progress and development. It’s important–always–to keep going and to keep trying. If something doesn’t work, then it doesn’t work. Move on. Go to something new, something healthful and helpful. I prefer coping skills that work things “out.” They’re rare. I don’t count “venting” because honestly, for me, talking about the thing directly sometimes stresses me out further. And as I’ve said, writing’s not tremendously healthy for me in these situations.

There is something about art I didn’t factor in though–until I tried painting with an OSP (Open Studio Process) therapist. More on the process itself later, but painting was something I had never truly done much of. But when I tried it–awesome. I was 19 and in this therapy session, I was basically asked to use any colors I felt I “jived” with and paint anything I “felt” like painting. OSP helped me to be non-critical of myself and considering it is not a major art of mine, I quickly unlearned the pressure to be good. I bought some acrylic paints, cheap canvasses, cheap brushes, and then realized how freeing it was to paint with my hands. I further connected to the canvas and to my “inner eye” and now in hard times, it is my best coping skill. I can use it to express the pain, to work some of it out. It’s creative, which is something I appreciate and flourish with. So it’s great. And things that have come into play also have been warm showers, although with body image and PTSD that has taken a while to develop into a coping skill; taking walks; adding things to a “beautiful things” list which I suppose is my equivalent of a gratitude journal, etc.

Many of the people I have talked to in the past have gone right along with my old mindset and have said, “Well, nothing works.” But I’ve learned: something’s gotta work. Something. And it doesn’t always have to carry negativity with it. Something positive has got to work. But you have to keep trying and thinking outside the box. With depression, it’s something that is often very hard to do. But you’ll find something if you keep trying. It’s not as unreachable as you might think it is!