Journey to a Hysterectomy: The Final Week

Content Warning: Discussion of female anatomy, in graphic and unpleasant detail. Discussion of gynecological problems, in graphic and unpleasant detail. Description of medical abuse. Ableism, sexism, ageism, all of which are internalized, active, and institutional. Reminder: I refer to these things as “content warnings” rather than “trigger warnings,” because I do not take responsibility for the mental health of my readers, some of whom I do not know well. I have listed the warnings that jumped out at me, but I may have missed something. I do not take responsibility for knowing the inside of anyone’s mind other than my own. Also, all experiences are mine and mine alone, and may not be suitable for generalizing to any larger group.

The ten days before the surgery were rough.

As a disabled person, I rely on a number of treatments of different types, ranging from prescriptions to over the counter medications to holistic and herbal treatments, to keep myself able to complete even the most basic tasks. Unfortunately, a lot of those turned out to be restricted to one degree or another for the ten days before my operation.

I had to stop taking my over the counter painkillers, which were already the fallback from my insurance recently refusing to cover my prescription painkillers anymore.

I was not allowed to drink tea – and teas of various kinds have been an important part of my healthcare.

At five days before the surgery, I had to start showering with a very strong antibacterial soap called Hibiclens, which is one of the kinds of soap used by surgeons to wash up before operations. It felt vaguely like I was washing my skin off, even though I wasn’t having any of my very common allergic reactions.

At three days before the surgery, I had to start using vaginal douche solution. Even after warming it with my hands, it was cold enough that the process left me shivering for over an hour.

The day before the surgery, I was restricted to a liquid diet. I drank a lot of Gatorade, and had meals of straight chicken broth.

The night before the surgery, I had to use a laxative enema, to ensure that there was the maximum amount of room in my abdominal cavity, so that my gynecologist (who was also my surgeon) would have less risk of puncturing anything that wasn’t supposed to be punctured. This was about as unpleasant and gross as I expected, but at least didn’t last very long.

Altogether, I spent the last ten days waiting for the surgery feeling abraded inside and out, and the fact that I had been off of my birth control pills for a month at that point also meant that I was essentially in a constant state of PMS for the entire time.

Then my very last period hit, in the last week before the surgery. It became apparent that, while the pills were certainly not doing what they were supposed to in terms of regulating my cycle and making my periods bearable, they were still helping, because that was a bad one. I bled incredibly fast, for a long time. My cramps were absolutely awful, and I was pretty much bedridden for those five days. I was concerned more than once that I would have to go to the emergency room because of the speed at which I was bleeding, but it didn’t quite come to that.

(I think I unnerved my husband at least once, when he heard me yelling at my own reproductive system. “Do your worst, bitch. This is your last chance.”)

I had a lot of instructions, and I followed them to the letter. I also pretty much quarantined myself against disease. I have a depressed immune system, and if I became ill in the week before my surgery, it could be canceled. So every time I planned to see someone socially, I checked to see if they were feeling well, and if not, I apologetically put them off. Fortunately, my friends are awesome and understanding, and they realized how much I could not afford to risk this.

The night before my surgery, I was finally allowed to take painkillers, to have some of them in my system at the time of surgery. Because my surgery was at 7:30, I had to arrive at the hospital at 5:30, which meant getting up around 4am. I decided it was pretty much not worth going to bed. I have a sleep disorder, which means I sleep unpredictably. The day before, I napped at random, as I tend to do, and I napped some that night. I also packed an overnight bag, just in case I wound up staying at the hospital.

I couldn’t have slept if I tried. I was too excited. I have a lot of medical anxiety, from my history, but it was pretty much completely drowned out by my excitement.

Next entry will cover the surgery itself, and the aftermath.

Advertisements

Journey to a Hysterectomy: The Last Month

Content Warning: Discussion of female anatomy, in graphic and unpleasant detail. Discussion of gynecological problems, in graphic and unpleasant detail. Description of medical abuse. Ableism, sexism, ageism, all of which are internalized, active, and institutional. Reminder: I refer to these things as “content warnings” rather than “trigger warnings,” because I do not take responsibility for the mental health of my readers, some of whom I do not know well. I have listed the warnings that jumped out at me, but I may have missed something. I do not take responsibility for knowing the inside of anyone’s mind other than my own. Also, all experiences are mine and mine alone, and may not be suitable for generalizing to any larger group.

A little over a month ago, I finally went to see a new gynecologist, the one recommended to me by my primary care doctor. I was nervous, because I’m always nervous when seeing a new medical professional, and because I’d never seen a male gynecologist before.

It turns out I found one of those rare gems in the profession: a male doctor who became a gynecologist because he realized that, being male, he would be able to get things done and be listened to in ways that a woman wouldn’t, and decided to use that to help women who needed medical help. As a result of this line of reasoning, he’s also predisposed to listen to his patients, which my primary care doctor had told me when recommending him.

My first fear was that it would take me months to get an appointment. As a new patient, trying to see a specialist, I have often had the following experience:

“Hi, this is Dr. [NAME]’s office, how can I help you?”
“I need to make an appointment.”
[Discussion of my problems and reason for needing an appointment urgently, and the fact that I’m a new patient.]
“We can work you in three months from now.”

This time, I got “Can you come in later this week? We have an opening.” And so it went.

The actual appointment

Everything happened shockingly fast. I went in, checked in, and gave all my data – height, weight, blood pressure, medical history rundown, medications taken, all the usual stuff – to the nurses. They were very welcoming, knowing I was a new patient, and explained that I would be getting a pelvic exam that day, though not a pap smear because I was menstruating.

I explained my anxieties surrounding pelvic exams, as a result of having been forced to receive them without consent from emergency doctors in the past. They assured me that a female nurse would be in the room at all times, as a witness to all practices, and asked if there was anything else that would help me be more comfortable, and asked me if I would be willing to sign a consent form before receiving the exam, so that everyone would be on the same page regarding that issue.

I responded that I need clarity and thorough explanations. I am very familiar with my own body and its issues, and I have had a LOT of examinations of various types. I know the basic procedures, but it helps me to know exactly what is going to be done, in what order, when, and why, and for how long. They were extremely accommodating, and never made me feel like my requests were burdensome or disrespectful – and that was when I started to feel like this might actually go somewhere positive.

Another experience common to both women and disabled people, and therefore particularly common to disabled women, is that of being treated as though we know nothing about our own health, and being treated as though self-advocacy in the doctor’s office is somehow disrespectful of the doctor’s own expertise. Now, obviously, it is possible to advocate in a manner that is disrespectful – but advocacy itself is not, by definition, disrespectful, and I have long believed that any doctor who treats it as such is not one whom any patient should trust with their health.

When I actually met the doctor, all of this was borne out: he started by telling me he was glad I was so involved in advocating for my own health, and was glad that I have taken the time to learn about my own conditions. He asked me clarifying questions, obviously not questioning the validity of my knowledge but just trying to get as much information as possible. His questions were beautifully formulated, because I could tell that if, by chance, I HAD made some huge mistake or knowledge gap regarding my health, his questions would have caught it, but their actual goal wasn’t to trip me up or find such things. He started his questioning from the assumption that my own information was all correct and based upon proper research and inquiry from other doctors who also knew what they were doing unless I said otherwise.
He then explained the exact procedure of the pelvic exam, the purposes of it, including identifying any reasons why I might not be a good candidate for a hysterectomy. A nurse entered the room, and at this point I signed the consent forms.

He left the room, and I changed into the medical wraps – you know the ones, the disposable paper robes – and arranged myself on the chair for the exam. The nurse entered first, asked if I was ready, and the doctor came back in only when I gave permission. He asked permission for every step of the process, from even before the very first time he touched my body.

This is what we should expect from this kind of examination.

The examination was painful, but it couldn’t really have been anything else: I experience pain in my pelvic region and reproductive system constantly. (A note about this: when someone who experiences chronic pain says they are in constant pain, this is not an exaggeration. I am in pain 100% of the time. If I am awake, I am in pain. End of story. Pelvic pain, in my reproductive system, is part of that, and has been for almost two decades.) Poking directly at it makes it worse, and there’s not much way around that. He did some very specific poking and questioning, and came to the conclusion that there is nothing else that could cause the specific symptoms I experience except endometriosis, and also that I am an excellent candidate for a minimally invasive hysterectomy, the latest procedure and the highest standard of surgical care of this variety.

I burst into tears on the spot. I was a little embarrassed afterward, but I just couldn’t help it. I’d entered the office more than half convinced that I would be told I wasn’t a candidate, or that we should try a bunch of other things first, possibly including some things I had already tried multiple times before. And here was a doctor telling me that exactly what I thought I needed, was what I in fact needed, and he was going to help me make it happen.

We started filling out paperwork, setting a surgery date, making lists of things that had to be done before it, getting insurance approval for the whole thing (which, it turned out, with a male doctor being very insistent, went quite smoothly).

The whole thing took less than an hour.

Pre-operative appointments
I needed four appointments: an ultrasound, a pre-operative appointment with my primary care physician to clear me for surgery, an appointment with my neurologist to discuss my risk factors regarding hormone replacements and therefore whether or not my ovaries should be removed as well, and a pre-operative appointment with the gynecologist, who will also be my surgeon, to give me more information. Additionally, I was told to expect a phone call from a hospital nurse.

The ultrasound was primarily to make sure there were no surprises lurking in my system that might mean the surgery could be more complicated than foreseen. Because I was still menstruating, I couldn’t complete the standard procedure of drinking huge amounts of water and not urinating for hours, without extreme pain, so I opted for a transvaginal ultrasound as, oddly enough, the less uncomfortable option. I’d had both before, so this decision came from experience. This is not to say that a TVU is pleasant; particularly during menstrual cramping, it was extremely painful, and again I had to run through all of my anxiety issues and consent issues with examinations, but fortunately I again was working with consummate professionals who understood exactly the gravity of the issues at hand. The procedure itself didn’t take tremendously long, fortunately, but the pain lasted for days. The images were forwarded directly to my gynecologist, and nothing surprising was found; fibroids in my ovaries, but we’d known about those.

The neurology appointment was very involved, going over familial and genetic risk factors of stroke, as well as my own complex seizure and migraine history. We eventually concluded that because the hormone replacements used after hysterectomy are natural hormones rather than synthetic, the risk factors are sufficiently lower that I should go ahead and have my ovaries out.

The pre-operative appointment with my primary care physician was a physical and some bloodwork, and nothing remotely unexpected came up.

Then came the nurse phone call, which was mostly an interview in which I gave every bit of information about my health history anyone could think to ask for.

The pre-operative appointment with the gynecologist involved bringing my husband with me, and getting kind of an infodump regarding the last few days of surgery preparation (which will be part of the next lovely entry), what to expect afterward, how the surgery itself will be performed, and a whole lot of other information.

I’m now in the stage of that final preparation, and will be posting more about that somewhere around Thursday.

Reasons (Other Than Constantine) To Watch Constantine

Author’s Note: This entry was a challenge from a friend, to write a review of NBC’s Constantine now that it’s truly hit its stride, explaining why the show is worth watching without resorting to a description of why its protagonist is awesome – that’s for another entry, possibly as I start my epic Hellblazer re-read. (No fear, it won’t take up the whole blog, I promise.)

It took some time for NBC’s latest comic-based show to get itself up to full speed, but by episode five, it has certainly done so – sadly, it seems, just in time for the network to decide against ordering an additional nine episodes, halting production at thirteen. In addition to being kind of a stupid move considering the show’s ratings (becoming one of the top shows on all the streaming networks, retaining over 80% of viewers from Grimm, which airs in the previous time slot, and showing ratings improvements of over 30% week-by-week, are all very impressive accomplishments for a show relegated to the 10pm Friday night graveyard slot, premiering opposite the World Series with its second episode airing on Halloween), the show has become truly impressive in its own right, even without considering the adaptation from Hellblazer, in numerous ways.

First, the acting is stupendous for the most part, much higher than usual for network TV. It’s not perfect, that’s certain, but in particular the dynamics between the characters are delightful to observe. There are small moments thrown in by the actors, moments of expression, exchanges of physicality that are some of the best I’ve ever seen in TV or film. The actors have been very clearly growing into their characters, and just as the characters themselves develop closer dynamics and become a team, so too have the actors. A modicum of research into the culture of the cast and crew on-set confirms that this is a show with a great set of people working on it, who have become friends as well as colleagues, and who have come to really love their work. Even rarer, they actually make effort to reach out to the fans to share that, something particularly to be treasured when dealing with any beloved and iconic property. The cast and crew have made deliberate forays into the fandom on Twitter; they sometimes turn up in the comments sections on other social networks. They are clearly listening to what fans have to say, but in the best of ways: the executive producers have confirmed that their goal is not to simply conform to everything the fans want, as that never works out well; they simply take it into account before doing their best to give the fans something we’ve yet to think of.

Which brings me to my second point: the scripting. The dialogue has been showing a significant quality curve upward, especially starting in episode three, “The Devil’s Vinyl.” Of course, acting and writing are inextricably intertwined, but we’ve all seen shows and movies where actors manage to screw up great lines, or manage to somehow deliver poor lines well. This show has neither problem – the excellent cast has been given increasingly phenomenal writing to work with, and the wit positively sparkles. One important result of this is that every episode of Constantine has some serious re-watch value. This is true starting even with the (relatively) weak pilot episode. The pacing is consistently rapid, there are constantly at least two things to follow in the story at any given time, and this show never condescends to its audience – a refreshing change from standard comic book fare.

The creators of this show are giant nerds, and they are fascinated with every aspect of their subject matter. They have made the assumption (quite correctly, as it appears from fan response) that at least a portion of their audience is the same way. This fascination goes far beyond the DC Comics universe, though that of course is its beginning – hence the appearance of dozens of “Easter eggs” hidden in the episodes to date – and extends to carefully researched folklore from around the world, linguistics, religion, culture, metaphysics, philosophy, and more. I have personally spotted over a half-dozen languages and writing systems used correctly in the show, and friends have confirmed more.

More impressive even than the research, though, is the respect accorded these cultures and belief systems. When possible, the producers have consulted actual practitioners of the faiths referenced in the show, and in several cases (most notably the dance ritual in episode five, “Danse Vaudou”) have actually incorporated those practitioners and their work into the relevant scenes as filmed. This is more important for Constantine than for some other shows: there are certain aspects to the story of John Constantine which are seriously problematic – after all, this show features a white male who takes direct advantage of the privilege that affords him, to walk safely into and out of places, and to casually appropriate bits and pieces of others’ cultures, to take on roles for information-gathering that accord him respect and authority, while others must make do with less due to their gender or race. This show acknowledges that at every turn, sometimes subtly, sometimes openly, such as Papa Midnite’s furious – and entirely correct – accusation, “You are a magpie of magic, a thief of tradition; you steal from other people’s cultures and beliefs to suit your own purposes.” It is both glorious and rare for a show to call out its own protagonist on his white male privilege.

Even more subtle is the show’s handling of the protagonist’s lack of privilege in certain regards. Serious mental health issues, physiological addiction, and oh, let’s not forget the bisexuality issue. Initially, I was upset when I heard the official line regarding this: it’s not going to be central to the show, and isn’t going to really be clarified one way or the other beyond subtle information. I, like many other viewers, took this to mean that it was going to be removed entirely. I now have to admit I was wrong in this. While I would prefer that the show deal more openly with this issue, they have actually done exactly as they claimed: sexuality is not central to the show or to the characters’ dynamics, and Constantine’s sexuality has remained ambiguous from the pilot episode onward, with a line-drop in episode five confirming his bisexuality in a very subtle way that can be ignored by anyone who wants to ignore it, but definitely points in that direction for anyone watching closely for signs. This is now being handled the same way as Constantine’s smoking: a gradual introduction, testing the waters to see how the viewer base reacts.

That attitude – experimentation, testing the waters of the viewer market – is typical of the way this show is being run. There is an amazing opportunity here for audience members to cast a vote with our wallets in favor of shows that display social consciousness, smart writing, progressive thinking, and complex moral analysis. If you like all of these things, you should be watching this show; if you have friends who like these things, you should be recommending this show.

One of the best protagonists in decades is just a bonus.

#SaveConstantine

Fetishized Books and Anthropodermic Bibliopegy

DISTURBING CONTENT ADVISORY: This is a post about the practice of covering books in human skin, and some of the disturbing ways that has been viewed by its practitioners.

There were numerous articles in the news recently highlighting a scientific finding at Harvard that one of the books in the university’s collection is covered in human skin. There were three books that might have fit this description, and two were disproved. The third, however, is a genuine example of the practice of anthropodermic bibliopegy: covering books in leather made from humans.

In particular, I was struck by the article in the Washington Post. The author ends her article with the line, “The real thing that we might all wish had been fake.” This, of course, assumes that everyone reading the article agrees with her in wishing that books were never covered in human skin.

Okay, sure, it’s a little creepy at first instinct, but as a friend of mine pointed out, becoming a book after death is not such a bad fate, and is actually one quite a few people would aspire to. And the woman whose skin went into the book was not killed for it – she died of illness.

What is universally icky, though, is the inscription, which fetishizes her skin down to its very pores, along with fetishizing the book itself. The strangeness of this, combined with the more-than-vaguely necrophiliac feel of this sentiment, seems to get to pretty much everyone.

Thinking about it, I realized there’s a movie director who captures this beautifully, in one of the most stunning films I’ve ever experienced. That director is Peter Greenaway, who seems, based on his work, to have a genuine fetish for the written word. I don’t mean the content; I refer here to the actual physicality of books and writing. This shows up in both Prospero’s Books, one of my favorite films of all time starring John Gielgud, and a far less disturbing example for those who want to experience Greenaway’s style, and in The Pillow Book, which features multiple characters who paint calligraphy on each other’s skin as an exploration of sexuality. It begins with the sweet concept of a father writing blessings in calligraphy on his daughter’s face as a birthday ritual. It becomes slightly twisted as she equates writing with love, and is willing to subject herself to what she perceives as degrading levels of fetishization to receive it. Eventually, this turns gruesome, and there is a slow poisoning scene which is disturbingly visually beautiful, done so that the writing on a person’s skin will be preserved as a manuscript, all with breathtaking French music in the background. The movie is both ethereal and obscene, both to extremes.

While, in both the movie and in the case of the Harvard manuscript, the lack of consent on the part of the fetishized person is disgusting (oddly, there’s more sexual consent in the film, even in the murder scene), the film captures the writing fetish in such intimate fashion that it becomes comprehensible to the viewer. A fetish for books doesn’t seem so alien after all. It may not be your thing, but if you’re looking to make some sense out of this particular news bit, and are prepared for some psychological drama, you may want to try the film.