adventures in getting sick and staying sick

[Fair warning: semi-graphic image of female anatomy at the bottom of this post. But it's sort of cartoonish and not a picture of a real body. It's not that bad. But If you scroll all the way down and get freaked out, don't say I didn't warn you.]

It is only Post Three and I already sort of hate this blog thing. I told myself I was going to do it weekly, because any less frequently than that and I knew I wouldn't do it at all. So I wrote 75% of a post last week, about relationships and how to deal with a box of root beer in a closet, because last time I said that basically only four things have happened in the last year and a half, and "learning how to relationship" has been one of them. But that post turned out all sappy and weird, so I said to myself, you can't post this! I guess that leaves the fourth thing. Fourth, both chronologically and according to the order in which I want to write about them.

About 8 months ago, I got sick. And I stayed sick. And no one could figure out what was wrong with me. At first, I gave it a few days and thought "it will get better, it's fine, stop worrying." That's what other people told me, and when it comes to these things, other people's opinions are often more trustworthy than my own. But I knew this wasn't like that. Something was wrong. Sometimes you have to trust what your body is telling you.

This illness, and the process of getting a diagnosis, has done so much stuff to my mind. And there have been so many feelings. But this is the summary version of the facts of what happened. After a week of not feeling right, I went to urgent care, and they took some of my pee and told me I was fine and to go home. Over the next few weeks, I went to the ER three different times. I got a transvaginal ultrasound, several X-rays, a CT scan of my brain and abdomen. In the following months, I saw a urologist and let him stick a camera inside my bladder. I went to a gastroenterologist and he stuck a camera in my colon and another one down my throat and into my stomach. (I woke up from anesthesia to find a straw in my mouth, and the other end of the straw in a cup of coffee. Because Mike knows me well. So I told all the nurses that I love him and he makes me tacos. Pretty sure it was "and" and not "because" but I really couldn't say. The only reason I even know any of that happened is that Mike told me later.) I went to my gynecologist and she said everything was probably normal and put me on hormonal birth control. None of these doctors could find anything wrong. Sometimes it was "Obviously there is something going on here, but this test didn't show it. Please call me if you find out what's wrong. I'm curious." A few times, it was "there is nothing wrong with you." (What is that?? Ego?) And once, it was "This is all in your head. You should go see a psychiatrist." (I could write whole posts about that one.) 

The closest thing I got to a suggestion of where to go next was from my urologist, who said it might be endometriosis. That's that thing where the lining of your uterus starts growing in places where it's not supposed to, causing a potentially intense amount of pain, and impeding normal function of surrounding organs. So I made a (third) gynecology appointment, but my doctor was out of the office, so I could only talk to her (whatever they are there) nurse practitioner person. She basically said "no it can't possibly be endo, go home." (Ok none of these people actually said "go home" in those actual words.) I was like how can you know that? I've never seen you before, you don't know me!" All sassy in my head. Not taking "no" for an answer. Not taking "I don't know" for an answer. So I went back to the gynecologist when the gynecologist was actually there. She listened to me. She said to give the birth control a couple more months to see if it would help, and if not, we could think about surgery to look for endometriosis, or like three or four other things that could be wrong but probably weren't. After those couple months, once it was clear that birth control wasn't going to solve all my problems (or really any of them), I made gyn appt number five(?). I came out of that appointment with "laparoscopic surgery" on my calendar for three weeks later.

My worst fear was not of the surgery itself, or that there would be some terrible kind of complication and I'd be worse off than before, but rather that I'd wake up and hear "We didn't find anything." So, I put my fears on a shelf, and we went to the hospital, super early in the morning, which is totally the best time because it's super quiet and there is no waiting. I got an IV (definitely the worst part of basically any medical anything for me) and after that, stuff was pretty chill. I got "a drug that might make you feel a little drunk but it will relax you" (Not sure why doctors don't just automatically tell you the actual name of what drugs they're giving you. It's like you have to pry it out of them. Who do you think I am, I'm not a child, I know a few words. Wait, you're giving me Versed? Kthx sry we're good now.)  I got an anti-nausea patch behind my ear, which, for some reason, I made the doctor go through so much work to convince me to get. I think maybe that was post-Versed and that's why I was asking way too many questions. But that's probably not how it happened. I'm probably just neurotic. But I'm happy I got that patch. Anyway, post-Versed (possibly pre-weird-anti-nausea-ear-patch) the walls started shifting up and down and then I don't really remember anything until post-op, when I heard "We didn't really find anything wrong. There was this one little spot that we're going to biopsy but it is too small to be causing your problems." My worst fear about the surgery came true, but I was actually a little bit okay with it at the time, but in retrospect that's probably because there was Dilaudid involved. Definitely love me some hydromorphone. Apparently the first thing I said when I woke up was "I love Mike, and I love anesthesia." No recollection. The doctor thought it was pretty funny. Glad that I got my priorities right, and left out the tacos.

One thing I'd gotten better at by that point was accepting things I didn't want to hear. I was pretty used to it. So a couple more weeks went by before my post-op appointment. Recovery was not the best thing and not the worst thing. (Although, six weeks later, I'm just now to the point where working an 8 hour day doesn't feel like a death sentence.) On the day of my post-op, I was totally expecting to just go in there and hear "so yeah as we said, we didn't find anything, glad you're healing okay" and I was going to be okay with that. But what actually happened was the doctor came into the room and sat down and said "So we got the pathology report back and it turns out it is endometriosis." What?!? I'm not sure what the look on my face was, but the doctor's response was "I know, I was surprised too!" Umm I don't think "surprised" quite covers it but okay yeah. She told me I have two treatment options: the first is to get Lupron injections, to induce medical menopause. The second is to get pregnant. Nope. Not an option. Even more expensive than Lupron, and also uhhh when you're done you have this other human to like take care of for the rest of your life. That's a pretty intense side effect. Nope. Oh yeah and plus with either of these "treatments," the endometriosis will almost certainly come back within a few months to a few years at most. But the kicker is: she is still not sure that endo is causing my symptoms. I was so relieved to have a diagnosis, but discouraged to realize that it might not be the diagnosis. And the treatment is so extreme and not guaranteed to work long-term. I went home and did enough reading online about Lupron to realize that it sounds like an awful idea and it has ruined so many people's lives. Stuff in forums like "DON'T TAKE THIS DRUG EVER. NOT EVEN ONCE." and "IT HAS RUINED MY LIFE." There's a petition to Congress to get it off the market. People have written thousands of letters about it. So yeah. Nope. 

I did some more reading online about natural ways to treat endo. No one is exactly sure what causes it, but a good theory is that it is a disease of estrogen dominance, and there are supplements out there that are meant to improve the body's metabolism of the "bad" kinds of estrogen. No one has really scienced about them, but at this point, I'll try anything that doesn't have a huge chance of messing up the rest of my life. At my post-post-op appointment, I asked my doctor about the estrogen metabolism thing, to confirm that I wouldn't permanently damage anything by trying some supplements. Because of course you can never get them to say that "natural supplements" are a good idea. But she's fine with it. At that appointment, she also told me that my round ligaments are abnormally long, which could cause my uterus to tilt backwards, and that if I wanted to, I could think about having surgery at some point to shorten them. And that my uterus has increased vascularity. She showed me my uterus side by side with a "normal" one, and omg my uterus looks like an evil monster that wants to take over everything. The normal one looks totally docile, like something I'd be completely happy to let live inside of me. It is puzzling to me why I learned these things at a post-post-op appointment instead of at the post-op appointment or the actual op. So I made an appointment with a urogynecologist (because you cannot have enough specialists) for a few weeks from now, to get a second set of eyes on things, and a second opinion for treatment options. 

And that, dear friends and family, is where things stand. 

Promised semi-graphic cartoon picture of what's happening here:

half of what happened

I told myself I was going to write a few posts this week, and have a backlog of them so I could just post them weekly and not have to think about it for a while. That explains why I'm sitting here on Saturday night staring at a blank page, thinking "Remind me again why I committed to this blog thing?" I don't know how to write anymore. That's probably because I don't read anymore. I'm not actually sure I even know how to read anymore. But I think my Netflix-watching skill has plateaued. You can't get any better at watching TV than I am right now. I figured if I'm going to be a literate human being, and have this silly blog that forces me to get words out of my brain and into writing, maybe I should be putting some written words into my brain first. Reading is docusate sodium for the brain. Generally works in 12-72 hours. The easier, softer way. So I picked up a book the other day. (I'm using "picked up" as a metaphor. I mean I downloaded some books from iBooks, on my iPad. Because who actually "picks up" books anymore. I'm not Amish. Not that I have anything against Amish people. Really. I grew up in a tiny town in central Ohio, a few miles from Amish Country, and, when I was in high school and we had nothing better to do, which was often, we'd go to the mall and watch Amish people try on shoes at Payless. I mean, if shoes were the only part of your wardrobe you really had any choice in, you'd get excited about them, too. And yes, mom, I do know that Amish and Mennonite are not the same thing. I just don't care very much, sorry. You raised me better than this. And just for the record I do still like real books with real paper, and I'm not just saying that because my dad runs a publishing company and I have to say that.) Where was I? I started reading some books. Electronically. Funny memoirs, so I can learn how other people write about their lives in a serious-but-I-don't-take-myself-too-seriously sort of way that does not waste other people's time. The problem with this is that the funniest of funny memoirists have had terribly tragic and/or totally bizarre events happen in their lives, and that's part of what makes them so funny, and gives them so much insight into life. It would be easier to write if I had something absolutely unbelievably appalling to write about. Or at least if I had supernatural wisdom or the secret to making millions of dollars. But really, my life is pretty mundane, I don't know anything much about much of anything, and I promise that absolutely zero of the numbers on the Powerball tickets my coworkers forced me to go in on are going to win us anything. Doesn't mean I won't spend a lot of minutes typing all those numbers into the Texas Powerball website. So, this is awkward. Stop reading now, if you want. You've already clicked on the link to this page, so you have already incremented my pageviews by one, which has already made me feel better about myself. Thanks.

For anyone still reading: Since I haven't had a blog in a while, I guess I can just say what happened since then. So this is what happened, sort of. I graduated from UT with my Master's in Arabic in the fall of 2014 (which was kind of miraculous and also vaguely kind of pointless, given what happened next. And no, I won't "say something in Arabic" for you, especially if you ask me in that tone of voice. You know what I'm talking about.) This degree has done me a whole lot of good: a few months after graduating (that's about how long I could be unemployed before my self-hatred outweighed my fear of job interviews) I got a job in a toxicology lab, using that chemistry degree I swore on my life I'd never use again. (Still working on the "never say never" thing. My "never"s always. fucking. happen.) On my first day in the lab, I met a coworker who grew up in the Arab world. He recited poetry to me, and he wanted to know all about my thesis. He knew all the technical terms for syntactic vowel markers and everything. It was great. We were going to be friends. And we were, for two whole days - my second day was his last day. A few months later, there was somebody else there who spoke Arabic. That was great. We were going to speak Arabic to each other. And we did, and then that person got fired. But it's still good that I know Arabic, because the other day, someone asked me about the word "ra's." As in "Ra's al-Ghul," the supervillain from Arrow. And I got excited for a second and I was like "Oh! That means "Demon's Head" and here's how you say it!" Turns out he didn't actually care about that, he just wanted to know the closest pronunciation in actual English. We decided on "Roz," which makes me cringe a little bit, but I guess that's the best we can do, since... I mean, you try explaining what a "glottal stop" is to someone who only speaks English.

See? I can't even say what has happened to me in the last year and a half in a linear and non-parenthetical fashion. And it's only been like four things. So anyway. This job. When people ask me where I work, I usually say "I work in a toxicology lab in South Austin. We do drug testing for pain management clinics." That way, they respond with "Oh, that's nice. The weather's nice today, huh?" and everyone can just move on. But what is really going on here is I work in a pee lab. I deal with hundreds of different people's piss. Every single day. Sometimes we find things in the cups. There have been worm-looking things. There has been slimy stuff. One time there was a piece of jewelry. Just chillin'. In a cup of pee. I don't want to speculate about what body part that thing was originally attached to or what kind of person lets things get to that point. But I guess it's possible to be on enough drugs that you don't actually notice and/or care if your genital piercing falls out when you're peeing. But I said I wasn't going to speculate. Ummm ok. So. I've learned a lot at this job. I've learned that there is aquamarine pee, lime green pee, lilac pee, cornflower blue pee. We are actually required to take colorblindness tests at this job. Not a joke. I've learned that sometimes people have so much alcohol in their pee that it makes your nose burn, from a couple yards away. And you can't un-smell that. I've learned that when you go to the doctor and have to pee in a cup, you don't actually need to fill it to anywhere near the "fill line." And it's less gross if you don't. Really, you guys, it only takes a few milliliters. So just fill it like halfway and call it a day. And please, tighten the lid down all the way.

When I first started there, all I did was pour pee out of cups and into plastic tubes, put stickers on some other tubes, and type a lot of information into computers. That's what eight years of higher education gets you, kids. Then after a while they let me learn how to operate LC-MS/MS instruments (liquid chromatography - tandem mass spectrometry in case that acronym isn't part of your daily vocabulary), which is neat. Then they made me do actual lab coat science, like with repeater pipets and graduated cylinders and pH meters and potassium hydroxide and acetonitrile. I kind of suck at this part because it's not spreadsheets or data, but I've managed not to screw anything up too badly so far. These days, they let me review LC-MS/MS data, like the final results you get after you've scienced the shit out of all the pee, and report it out to the doctors. Which is also kind of neat, I think, and also easier than the test tube part (but that's probably just because I'm good at numbers and bad at actual objects) and less gross than the pouring pee part, and also you get paid more. But then there's the part where if I make a mistake and I accidentally tell a doctor that a 72-year-old woman is using heroin and she's really not, that's a pretty bad thing. Thank God I haven't done that yet. Because that's probably someone's grandma. So it's a little bit of responsibility, and I have to pay a lot of attention. But still, I hope this is how the rest of life and jobs works, that every time you get promoted, you just get paid progressively more to do progressively easier work, and touch progressively less pee. But I suspect I'm just lucky right now (except for the pee part - I think better jobs should always involve less pee), so I'll take it while I can get it.

I've decided this is long enough for one post. Surely anyone who was reading at the beginning started skimming somewhere around the fourth set of parentheses and won't possibly ready any more after this. So, stay tuned for the other half of what happened. If you want.

let's try this again

This is the first sentence of a new blog. (The first sentence is always the hardest to come up with, so, there, now it's out of the way.)

One of my habits is letting good habits die, getting sad about it, and bringing good habits back. Habitually. For a few years, a few years ago, I was writing. Like, kind of a lot. Journaling, blogging, writing academic papers. And then suddenly, or gradually, I stopped. I finished grad school, and people stopped making me write. My life got better, and it started being more fun to live it than to talk about it. Then parts of life got hard, and I didn't want to talk about it. I forgot that, for me, writing is part of living. It occurred to me the other day that I don't remember the last thing I wrote that wasn't a text message, a Facebook post, a work e-mail, or a grocery list. That made me sad. I thought, I'm not the kind of person who blogs anymore. Then I realized that I can be the kind of person who blogs again, if I start blogging again. Obviously. Wait, no, blogging is a little scary, it comes with unnecessary expectations and imaginary pressure and unwarranted self-criticism. But yes, because it's also fun sometimes, and even when it isn't fun, it's helpful. And fear is dumb. Most of my decisions that I've made based on fear have turned out less than awesome. There is no growth inside my comfort zone.

So I got online. I don't have to commit to this. Let me just see if I can choose a template, come up with an address, think of a name. I stared blankly at the field that said "title," wondering why it was so difficult to come up with a name for a new blog. I'd get ideas, but no, that one's too cheesy, that one doesn't mean anything, that one's too specific. This isn't even a big deal, let's stop making it difficult. What is this blog about? What is my life about? Do I even have anything to say? What even are words, anyway? Katie, you sort of suck at letting simple things be simple. Sorry. But, cute try. So I decided to be less intentional about finding a name, and instead just started listening to the words that went through my head, the words that came out of my boyfriend's mouth, the words in the movie we were watching. ("Extract". It was silly. We enjoyed it. Someone loses a testicle.) At one point, I was trying to express a thought but was struggling to find the right word. My boyfriend completed my sentence for me, and I said, "that's the word I was looking for." And there it was.

Seeking and finding. Not knowing what I've needed until I've gotten it. The frustration of being so close to understanding something, but not quite getting there. Getting help along the way. The satisfaction of discovery, the beauty in the expression of truth. The awesomeness of the fact that words both represent reality and shape it. The joy of words as tools. Words that represent concepts that are new to me, and, once I've discovered them, change the way I view life, and live it. Words that represent familiar concepts, but frame them in a new way, a way that makes things make a whole new level of sense. Words that aren't even real words, but need to be. Like "fauxstalgia," missing something that never existed, or didn't exist in the way you remember it. (Credit for that one goes to aforementioned very clever boyfriend.)

So, there you go. A whole blog post about the process of deciding to blog. We'll see what comes next.