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.”

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.”

I am neither the CEO on Prozac nor the ward of the state in the quiet room (updated 09 May, 2018)

I have always lived life feeling outcasted. In fact, it was such a problem that my mother specifically bought a book for me entitled Leo the Lop, in which a lop rabbit whose siblings have upright ears, sets out on a quest to define what “normal” really is. Throughout the course of the book, the charming illustrations depict Leo’s journey of self-discovery which ultimately ends with the absolutely dissatisfying conclusion that “normal is whatever you are.”

I liked rabbits, I understood Leo’s wishes, and I was five, so I enjoyed the book, but upon closing it and going into kindergarten the next day, I was viciously reminded that regardless of what Leo thought normal was, my classmates did not share the same conclusion.

I have never been normal, no matter what I have been.

I recognized at that time as I still do that the whole argument for “normalcy” is supposedly subjective, and that was the point of the book. There is no straight, wholly accurate definition for what “normal” really is, and as Morticia Addams so eloquently puts it, “What is normal for the spider is chaos for the fly.”

Abnormal Psychology

So, there being no true definition for “normal” in terms of human behavior and character what must “abnormal” mean in psychology, which is, by very definition, the study of human behavior and character? because it does exist. It does exist, and I do find it funny, considering that according to NAMI, 1 in 5 American adults experiences mental illness during a given year[1]. And let’s not play dumb. We know that’s what psychology means by “abnormal.” Forget that by mere observation, anyone aware enough can tell you healthy lifestyles — both physically and emotionally — are difficult to achieve and maintain even with the right circumstances, let alone being in positions in which you greatly lack resources or a support system. Forget that by mere observation, it is pretty obvious human beings are prone to unhappiness, dissatisfaction, and deteriorating health if not regularly maintained, regardless of whether or not they meet the criteria for a diagnosable illness. However, ask many professionals in the psychiatric industry, and they surreptitiously will tell you two conflicting things. First, out of their mouths will come, 1.) “There is no such thing as ‘normal,'” and then, throughout the course of treatment, you will start hearing the real message, which is, 2.) “But you are part of an abnormal statistic.”

“Diagnosing” the DSM

If you’ve been reading my blog for a while, you’ll probably know already that I am highly critical of psychiatry. I support psychiatry to an extent and am a strong believer that many people cannot get by without it. However, I am an extremely strong advocate for patient advocacy, therapies, and self-assessment and awareness. It is not a secret or at least should not be a secret that doctors are able to accept “legal” bribes from pharmaceutical companies[2]. This is a way of developing and testing drugs, but let’s also be clear that it is another way doctors make more money, and it is extremely controversial for what I feel are extremely obvious reasons.

It is not entirely the doctors, though. I feel many times, especially in psychiatry, prospective or even well-established patients will come in and expect not only a prescription but also expect a prescription to solve their problems. That being said, they will also expect a diagnosis. Antidepressants are often called “happy pills,” which is not only grossly misleading but also toxic. While depression is sometimes organically chemical and is definitely affected by chemicals, I feel depression is more often situational or circumstantial, due to things that are entirely fixable with the right resources and support that do not involve drugs. Those fixable things include diet, activity, interpersonal skills, intrapersonal skills, stress management, etc. I feel drug intervention can be necessary to break the cycle of depression which I’ve said before is often a Catch-22 even in circumstantial depression, but I feel psychiatrists overmedicate needlessly without offering much authentic help.

Overmedicate. And overdiagnose. Which leads back to the question, what have I been?

Childhood on Drugs: A [Super]Brief Psychiatric History Snapshot

When asked by any new psychiatrist, “What meds have you been on in the past?” I always have to laugh. Not just snicker but throw my head back and give a hearty, long-lasting, “you’ve gotta be kidding me, I hate this question” type of laugh. I usually follow with, “Do you want me start from my infancy or skip to when I was prescribed Ritalin for ADHD?”

“ADHD?”

Yes, ADHD.

It was the 1990s in the United States, and ADHD was the illness du jour. I was often restless and excitable and had difficulty focusing. Also, I was an insomniac. These symptoms were mistaken for the whole criteria of ADHD after I was taken to a psychiatrist who met me for 15 minutes and decided “what” I was. I have learned since that this was how I responded to change, disorder, and attachment as a child. My restlessness was part of a much bigger problem, involving compounded trauma.

I was about seven at this time and was often in the nurse’s office complaining of real headaches, stomachaches, and other aches and pains, as such with many children who have undergone or undergo trauma. I would stay in the office for quite a while, not wanting to go to class because of pain and discomfort that I realize now were manifestations of serious emotional distress and medically real, too, in the sense that I was already suffering symptoms of endometriosis.

I had other symptoms and contributing factors, as well, that the psychiatrist did not bother to explore. I was hypersensitive and felt chronically lonely, unheard, and felt the responsibility of everyone else’s happiness on my shoulders. I had terrible nightmares and feared men — not monsters — being under my bed.

I felt filthy and disconnected from my body and often felt I was being watched and often stayed up nights at a time, thinking that if I awoke I would be in a UFO and being dissected on a table. I let people throw rocks at me until I bruised because I thought that’s what it took to have friends. I suffered from chronic pain, particularly joint paint, and of course, I felt absolutely like a freak: in the classroom, in my town, in my country, in my home, everywhere. In fact, I started believing I wasn’t even human. But I was put on Ritalin, Concerta, Strattera, Adderal, because according to the psychiatrist, I was a seven year old psychiatric patient who had ADHD. My last diagnosis apart from PTSD was Schizoaffective Disorder which is in all fairness, similar, I suppose, to Bipolar disorder, which is difficult to differentiate from ADHD in children[4]. Funny thing is, Adderal, among many other stimulants, is known to exacerbate and even create psychosis[3].

**It turns out I am not alone with hallucinations or paranoid thinking in terms of PTSD only, and I do not match the necessary criteria for Schizoaffective Disorder. I suppose another “du jour diagnosis” by doctors who do not listen carefully. I have been off antipsychotics since October and have had minimal auditory hallucinations that ended completely by February.**

I have had to deal with other what I consider are “diagnoses du jour” that have only been combated through advocating for myself. I have had maybe the help of one or two professionals throughout my journey who have taken the time to try to understand me. For a lifelong history in treatment, that is grievously sad.

In the psychiatric profession, there may be no normal, but I suppose there is a way to be normally abnormal, and I am not it, either, even though they want me to be.

They’re not all wrong though, because I do think some people are.

It’s all about that Taste Bud Principle, even though it’s also not

While there are many people in mental illness advocacy, I constantly see two messages that are both extremely pervasive and probably extremely confusing to people who do not understand other people, regardless of whether those people are diagnosed with or have a mental illness, the same mental illness, or do not have any mental illness at all. Those two statements are: 1.) Do not pity us. We are the same as everybody else. 2.) Treat us more sensitively, because we struggle differently than you do.

Continue reading “I am neither the CEO on Prozac nor the ward of the state in the quiet room (updated 09 May, 2018)”