There is a piece of human nature that I find really fascinating – It’s the awareness of any one human’s ability to manipulate their environment. There are definitely sub-facets there, but that’s the big part. And I don’t think it’s a scale, either – I think it’s an off/on switch. Once it’s switched on, it never goes back off. Some people are born with the switch on. Some are born with it off, but something eventually flips it, and some people live their whole life with it in the off position.

I used to think it had to do with ingenuity, creativity, skill, or intelligence. I don’t think that anymore. I think some brains are just wired to accept their situation as it is, and some are wired to change the situation to suit them. And you can rewire that connection. You can also choose not to act on it, but that doesn’t change the awareness. Either you realize you can change your environment, or you don’t.

Some examples (I thought that might be easier to see where I’m coming from than to try to explain in my normal rant format.)

Your desk at work sits on an air conditioning vent. Your feet are always freezing.

Some people accept this reality. They wear warm socks, bring a blanket, maybe even bring in a little space heater. They adapt themselves to suit the environment the best the can.

Other people ask if they can move the desk. Or they climb under the desk, take the vent cover off, and put foil underneath to block the vent. They change the environment.

Your kitchen faucet has low hot water pressure.

Some people accept that, and just live with it. They may use another sink for some things. They may call a plumber.

Other people investigate, even if they aren’t sure what they’re looking for. They see if any bits unscrew. They might google the problem. They check for solutions.

I want to again mention the distinction, though. I am not talking about “laziness” (which is a made up concept but that’s not the point, see this fantastic article by Devon Price.) I’m also not talking about people who know there may be something they can do, but don’t want to get their hands dirty. I am talking about people for whom it never occurs that there may be something they can do about it. It just is what it is. Their environment it static, constant.

The entire mentality affects so many parts of your life. I know, because that switch used to be off for me. I grew up in a household where things just… were. I was like that. My brother was like that. My parents were like that. You just learned to live with the inconveniences of life. The front sidewalk was uneven, so you watch your step. They door doesn’t latch well, so you always double/triple check it. The windows are hard to open, oh well. It didn’t *occur* to anyone that those small concrete sidewalk slabs aren’t THAT big, they could be dug out and re-set with some help. It didn’t occur to anyone that a door latch could be pretty easily replaced. It didn’t occur to anyone that the wood tracks on the window could be sanded a little and smoothed out.

You can learn exceptions and still keep the switch off. I took computer networking in high school and college. I realized that if your computer is slow, you can do something about it. That knowledge didn’t necessarily apply to the broader world though. It did, however, put some pressure on that switch.

Necessity is the mother of invention.

I think that’s probably how that switch turns on for a lot of people. For me, it took a few “exceptions” before suddenly the world became full of options. The first was computers – When I was in high school, my parents did gift me a cheap computer for Christmas. It was an infinitely kind gift honestly, considering we didn’t have a lot of disposable income. If course, I managed to almost immediately kill it by spilling an entire vase of water on it. I certainly could not afford one, so if I wanted a computer, I had to get creative. I had to fix that one, or Frankenstein something else together from parts I could scavenge. I had enough knowledge from my bit of networking classes, and some access to other broken machines, and managed to keep piecing together computers. Honestly, in some ways, I’m still using the same computer today since all I’ve done since then is keep replacing bits and pieces as need replaced, or as I find better broken machines.

Then next was cars. I really wanted a car, but again, poor. A friend of mine offered to sell me his running (but barely) blazer for $300, with the mention that he had no idea how long it would live. Perfect! I had it about two weeks before it’s first failure. And then it sat, for a few weeks, in my driveway, just rotting away. The loss of freedom was eating at me, but I could not do anything. I eventually managed to convince a neighbor to look at it, and it was a serpentine belt that had snapped. He told me he’d help ME fix it, and we did it together. This was a rather easy repair, and I was baffled that taking this car from “no power steering, screaming horrible noises, overheating” to totally fine was like a half hour of putting in a belt. Even that didn’t quite flip the switch, it didn’t empower me to try and just fix things on my own. But it made me start thinking.

No, as much as I’d hate to give him any credit since he kind of fucked me over in a lot of ways, I think the honor of flipping the switch goes to my ex-husband. He was born with that switch on. And with the foundation of the computer and car stuff, all it took was seeing someone who, when a door was squeaky, would oil it, so on and so fourth. And I quickly began to see how the world can be manipulated to make my life better.

Now, every time something is a barrier, no matter how small, my instinct is to figure out how to remove the barrier as opposed to how to work around it. Adhd makes it difficult to always effectively DO something about it, but my brain always recognized things and thinks about potential solutions. And even when things aren’t barriers, it’s spinning away trying to figure out how to alter and improve things.

I do remember the moment I realized there was a switch, that there was a distinct difference in how these brains process their environment. A coworker of mine, a nice lady maybe in her late 50’s, was sorting some jewelry, and reaching way over with some degree of effort to set each thing on the scale and weigh it. I’d been working there two or three years, and nothing on her desk ever moved, it just was where it was and I figured that’s how she liked it. Who am I to interfere?

Hearing the struggled grunts to stretch over got to me eventually though, and I said “Do you want me to move that scale to the other side of your desk? There’s another outlet over there, it’s no problem.” And she stared at me for a second, almost confused, and then smiled gleefully and said “Oh, yeah! That would be great! I never would have thought of that.” So I unplugged the scale, moved it over, and plugged it back in.

A few days later, she told me she was at home doing something or other in the kitchen, and she suddenly thought about how much more sense it made to have that scale on the other side of the desk. And she realized how many things in her kitchen would make more sense if they were moved, and she moved things around. She was EXCITED.

And I think for a little moment there, my inherently mean brain (something I’ve worked really hard on correcting) thought “… Wow, what a simple woman.” I caught myself though. She was smart, she was capable, she was reliable – She just didn’t see the world the same way. And then I suddenly realized that I used to be just like that. I used to see the world the same way. My environment was static, constant. Until it wasn’t.

And I just love the awareness that the switch is there, because since then, I’ve been able to share that awareness. I see people who have that switch in the off position, and I can foster that flip. And I think that’s really cool.

Merriam Webster: Paranoia, noun. para·​noia | \ ˌper-ə-ˈnȯi-ə  , ˌpa-rə- \

a tendency on the part of an individual or group toward excessive or irrational suspiciousness and distrustfulness of others

I have some issues with paranoia. Not in the clinical sense, I don’t think. Merriam Webster also defines paranoia as “mental illness characterized by systematized delusions of persecution or grandeur,” which I don’t think quite described what I have. I don’t think the paranoia is it’s own thing, or the result of any single mental health issue. It stems a little bit from everything I deal with – The cptsd, the adhd, the generalized anxiety, the imposter syndrome, the rejection sensitivity, and a lot of bad past experiences.

I think there’s a lot of grey area between what I want to call “paranoia” and what would really just be defined as anxiety, but I feel like this is a different beast than the generalized anxiety.

There is a principal in animal training, and I presume people behavior too, but I’m an animal trainer so that’s where I know it from; Intermittent reinforcement. Broken down to a simple concept, it’s that rewarding a behavior *sometimes* can actually be more reinforcing than rewarding a behavior *every time.* There’s a lot of variables and conditions here, but it’s a solid concept.

You can see this principal in action when you consider the act of gambling. A small reward given every time gets boring quickly, people lose interest. A large reward very sporadically is what keeps people coming back, even if the total reward ends up being less than what you’ve put in to the system.

I used the word “reward” above because that’s the easiest way to explain it, but that isn’t an accurate word to use when getting in to the details of behavior. It’s more accurate to say “if a behavior is reinforced intermittently, the behavior may become stronger than if it’s reinforced consistently.” Reinforced doesn’t always mean a reward in the traditional sense. For instance, if a bear is charging at me, and I scream at the bear, and the bear runs, the behavior of “scream at a bear” has been reinforced. It doesn’t mean someone handed me some treats.

It can get even messier, too. A flavor of superstitious behavior (a real term) is a perceived result (I made that one up. There might be a real name for it, I have no idea.) Sometimes, a behavior serves no purpose, but the brain says “Oh, it DID serve a purpose, the only reason the bad thing DIDN’T HAPPEN was because of that behavior.” For instance, if you imagine a bear is just out of sight, and you scream “I KNOW YOU’RE THERE, BEAR” and then no bear attacks – Well, the behavior of “scream at bear” has been reinforced – Even if there never really was a bear.

Anyhow, the point of that little behavior sidebar is to say; I know where my paranoia has been reinforced, and I can pretty easily see all the roots and branches and understand why it keeps propagating. It starts that first time your trust is violated in some way. Someone lets you down. And when that happens a few times, you start identifying the signs. And then when you start to see one of those signs, you start paying attention, waiting to see if things are going to break bad again.

And if only once, you see a sign, and things break bad, suddenly the 5, 10, 20, 100 times you saw a sign and nothing bad happened are pointless. The paranoia increases. Your alertness to those signs increases. The behavior of paranoia has been reinforced, because you were right that once. Intermittent reinforcement.

I could spend a few hours typing up all the times I recall that paranoia being reinforced, but that’s not really what I wanted to write. But a few big instances of thinking something was up and being right is enough to cement this behavior. And in my case, unfortunately I think, those cases were all “someone is out to get me” cases. Someone trying to fuck me over, someone trying to make a fool of me, dumb kids playing dumb pranks through bosses trying to get me fired.

And likewise, being aware of the potential for someone being out to get you, you start altering your behavior to shut down their attempts. Even if nobody was ever out to get you, the fact that you altered a behavior and nothing bad happened means you feel it was effective. The behavior has been reinforced, due to that perceived result.

Anyhow, the point is, I have some issues with paranoia.

It affects every moment of my life. Sometimes in small, little ways. Sometimes in big ways. As I was doing my morning check of the camera system at work to make sure nobody had moved the cameras, I began to think of all the little ways the paranoia eats at me.

So we’ll use today as an example. Today is an extremely average day, nothing unusual or out of the ordinary has happened.

I live on the third floor of a three-unit apartment, and we all share a creaky staircase. While I was checking on the kittens, I heard footsteps. I immediately turned my music off and waited quietly incase they were coming upstairs. I assumed someone was upset with me, or wanted something from me, and immediately went in to ‘pretend I’m not home’ mode.

Nobody came upstairs of course.

After a little bit I went about my business. When I stepped outside my apartment door I saw through the window the garage door was open. I figured either the landlord is outside working, or someone broke in to the garage and stole my stuff. If they already stole my stuff, no point in rushing. If the landlord is down there, he’s probably hoping to run in to me since he knows it’s about the time I leave for work. He probably wants to talk to me about something I’m doing wrong, or ask me for something. I’m running early though, so I’ll hang out in my apartment a bit longer and hope he leaves.

He wasn’t there, of course. And nobody broke in to the garage, either. Someone (probably me) just didn’t latch it properly.

I leave for work. I enjoy driving, but hate traffic, because I assume everyone has a personal vendetta against me. I exit the highway and pull in to a double right turn lane. I pull in to the outer lane, as it’s the lane I need to be in. There is a car in the right lane. I think “They definitely need to be in the left lane, they just picked the curb lane in hopes of making a right on red. They’re probably going to pull straight in to my lane when the light turns green. Or they’ll floor it and try and get ahead of me.”

Well, they did pull in to my lane, causing me to have to veer over and honk. So there’s the paranoia reinforced.

A little bit later, a truck pulls out in front of me at a light. My light was green. He made a right on red. I am logically sure my light was green, but I become convinced that maybe the light was broken, maybe we BOTH had greens? Maybe he had a red but didn’t notice? Who knows why, but he definitely is mad at me now either way. He must think I blew the light. So now, even though I was driving considerably faster than him, I hang way back to avoid potential eye contact just in case he’s going to yell at me or flip me off or something.

I stop at the gas station to get some bottled water. The truck is there. I pull back out, and park at my work two doors down and walk over so he doesn’t see my car.

I spend the entire time at the gas station being extremely aware of everyone, staying out of everyone’s way, in case some mysterious truck driver is going to recognize me.

That obviously doesn’t happen. Nothing interesting happens.

I get to work, settle in at my desk, and I do my morning ritual. I don’t do anything I shouldn’t be doing at work, I hate that logic of “If you don’t have anything to hide, you won’t mind if I…” I’m not afraid of being caught doing something wrong. I’m afraid of the idea of someone HOPING to catch me doing something wrong. The idea that someone has it out for me. So I start my morning ritual, which is pulling up the camera system (only myself, the two owners, and one other employee have access to it) to check if any of the cameras have moved. Primarily, the ones on my floor, and most specifically the one that points at the shipping desk. My desk is slightly off from any of the cameras since they are focused on doors / windows / exits. There’s also one above the shipping desk so that if someone claims something wasn’t packed right etc, I can check the footage and see how it was packed. I check to make sure nobody has moved that camera to point at my desk instead while I was gone. Sometimes I check this several times a day.

I also check the time clock, to make sure all my punch times are correct and nothing has changed.

And as I was doing these morning rituals, I thought to myself how ridiculous it all was. How, in the two hours I’d been out of bed, my paranoia had already had such an impact on my day. My anxiety meds do a LOT to help with the level of paranoia, and the impact that paranoia has, but it does nothing to stop the initial concerns. And unfortunately, just often enough something will reinforce that concern.

I’m not including all of the paranoia thoughts I have that didn’t lead to actions. I always have a constant dialog of wondering why people didn’t answer messages, wondering what the meaning behind someone’s words was, so on and so fourth, from events today, days ago, weeks ago. Some of that is anxiety. Some of that is paranoia. It depends on the context.

I’m not sure this is a behavior I’ll ever be able to fix. It’s low on my list, my grand list of mental health things to work on is roughly organized from what I perceive will be easiest to what I perceive to be hardest to reduce or eliminate, with a little bit of weight of how much they impact my life altering the order slightly. Paranoia is low on my list right now, because I feel it will both be very difficult to address due to a strong history of reinforcement, and does not have a severe impact on my well-being (vs some of my other struggles.)

But it’s still worth writing about.

The Past

I’ve always been ambiguously sickly.

There was always SOMETHING wrong when I was a kid. A stomach ache, a toothache, an ear ache, dizziness, a random pain, so on and so fourth. When a kid always has something ambiguous and unprovable wrong, it’s easy to dismiss that as fussiness.

I remember my experiences well, but looking through the lens of experience, it’s still hard to sort out some things. What I had was a severe anxiety disorder, for sure. That’s probably the actual source of most of the gastro-intestinal issues I had. I distinctly remember working myself up in to a panic at the idea of going to school, and driving myself to hyperventilating or throwing up. I definitely faked a few fevers to stay home, and remember the immediate relief when I’m succeeded in my ruse.

That nervous disposition made it very easy to view me as ‘dramatic.’ And unfortunately, I think it’s human nature to put kids in boxes. Once you decide a kid is being dramatic about their health, then all of their experiences become part of that drama.

We had a family doctor growing up, Dr. Agee. Dr. Agee saw me as a dramatic child. A hypochondriac, acting out to get attention. Attention has never been something I wanted, I always just hoped to sink in to the background. But once your doctor thinks that about you, it skews how they view any problem you present with.

I could never run very fast. I was always clumsy. I slept a lot. I was always fatigued (but also adhd hyperactive. You can be both! They do not cancel each other out, they just make you pissy and weird.) I was always last in any gym class competition. I was always winded or in pain when nobody else was. Everything was harder for me, because I was “dramatic.”

I thought I broke my foot when I was, oh, 11-ish. I was sure it was broken. It was excruciating. My mom took me to the doctor, she examined it, and determined it was fine. So I did my best to deal with the pain and go about life. The pain got better after a while, but never went away. I thought I broke it again maybe a year later. That time, they did an x-ray. My family doctor looked at it, said there was a spot that COULD be a hairline fracture, but was almost certainly nothing. Still, she humored me, and it got wrapped and I got some crutches. I stayed off it for a few weeks, then was told to start using it. It still felt broken. Some days it hurt so bad I’d start sobbing at the idea of standing up. I would get sent to the school nurse, my mom would pick me up, and I’d see her frustration. I felt guilty. Was I just being dramatic? I thought I broke it a third time, and I just started using the crutches again and tried not to make a fuss about it.

Anyhow, around high school, a lot of my issues improved. And I thought, huh, maybe I was just dramatic! Looking back, I realized I just got very good at ignoring and pushing through. I had learned that making a fuss does nothing to solve the issues, and just adds guilt and shame to the plate. I had learned to accept that actually, everyone felt like this, and I was just dramatic.

… As it turns out, I was not being dramatic.

This is an extremely condensed version of my cptsd from medical trauma. I’m not even going to touch on the mental health things, just the physical ones. The mental health history is about the same, though. Just replace all the physical maladies with “anxiety,” “adhd,” “depression.”

The first time I experienced a medical professional validating one of my complaints was when I was 22. I had at that point learned to shut up at doctors, there was no point in expressing complaints. I was meeting with a new general practitioner and we were going over basics, and (probably because she has a history in sports medicine) she was being pretty detailed on patient history with physical injuries etc. She specifically asked if I had any feet problems, and I said “The left one hurts sometimes but it’s not a big deal.”

I expected that to be the end of that subject, but even just the fact that she acknowledged it was shocking. She asked for more detail, and I told her that sometimes I step wrong and I have to stop moving because it hurts to bad, but it gets better after a few minutes normally. She kept pressing, and I told her it hurts a little all the time, but just like a normal baseline pain, it doesn’t really bother me.

She then asked me to take off my shoes, so I took off my left shoe. And she told me to take off the other one, and I said “No, it’s just the left foot.” And she said “The easiest way to identify a potential foot issue is not by looking at the foot, but by looking at the symmetry between both feet.” She had me take off both shoes, both socks, and stand up.

And she stared at me for a moment, and she said, in the blunt casual way she still does today “well that’s not right.”

I think most people would be concerned or maybe even annoyed if a doctor said something like that. Before she could even say more, my response was to break down crying in relief. This had plagued me my whole life. I had been dismissed so many times. I had convinced myself nothing was wrong, that it was in my head. This tiny crack of acknowledgement was enough to break a dam of emotions, and I lost it.

She sent me to a foot specialist, who took x-rays. She put the x-rays up on the screen, looked at them, and the first thing she said was “Wow, you must be in terrible pain.”

Cue more crying.

As it turns out, I have accessory naviculars in both feet. It’s an extra bone or bone fragment that floats above your navicular bone on the inside arch of your foot. It’s a fairly common anomaly and normally causes minimal or no issue. In my case, on the left foot, it had WRECKED SHOP. Many of the bones were bent at strange angles. My arch was messed up. My ankle was bent strangely. The tendon was not running through the right part of the foot. The right foot was messed up too, but not to the same degree. The stress on the bones HAD in fact caused repeated hairline fractures (so, yes, I was just walking around on a broken foot for like three years.)

She said she was not surprised a general practitioner couldn’t see the issue, but it would have been extremely obvious at a glance to any foot specialist. She said that early in life, like when I first got x-rays done, the issue probably could have been significantly improved with orthopedics. It would require serious reconstructive surgery to fix now due to the negligence.

So, she removed a bone, cut a tendon, did some rearranging, put in two pins, and I spent months with a walker and then crutches. But I can walk without pain now. Turns out, I wasn’t making that up.

Chronic toothaches? Turns out I have genetically bad teeth. Despite good dental care my whole life, I had to have twelve fillings by the time I was 16. I’m probably due for more, though can’t afford it. Chronic earaches? Well, bad teeth, plus I have a vertigo disorder now. Fatigue? Winded? Joint pain? Turns out I have a b12 deficiency, probably EDS, and now it’s looking like I may have Alpha-1 – I’ll know in a few weeks, waiting on results.

The Future

For the last 10 years or so, every medical issue I’ve learned I had has been GOOD news. This is a feeling that healthy people have trouble grasping, but most sickly people know very well. Finding out you have a particular problem does not result in an “oh no, this will plague me for life.” feeling. It results in a “I KNEW this was a problem, and now I have an ANSWER and can make a PLAN.” feeling. I’ve felt empowered by every diagnoses or even lead I’ve gotten. It’s been a huge part of my growth and development, and also a big part of my identity (this is why so many people unintentionally ‘become’ their conditions, which I know can be kind of overbearing and annoying.)

But the last few months, the reality of my deterioration is setting in. ADHD has been a bit of a shield. I wouldn’t call it a blessing by any stretch, it’s made SO many other things very difficult for me. But my brand of ADHD comes with a few perks: That sense of immortality and indestructibleness that children so often have has carried over in to my adult life. I run around, I climb trees, I jump on things, I do dumb stuff all the time. I ignore my body’s signs that I need to slow down. I have become excellent at ignoring pain. I push it too far, over and over and over again. But the last few years, some of my issues – Most specifically joint pain – have become rapidly worse. And the last few months, they’ve become impossible to ignore and almost impossible to push through.

Yesterday, I did what I always do and ignored my body. We’re having a big neighborhood festival, and my hips were a little sore before I even started walking. I thought to myself “I should go kayaking today since I know I want to do that this weekend, and it won’t wear me out too bad. The festival is all weekend, I will save that for Sunday.” But then I went out on Saturday. I walked for maybe a mile and a half, maybe two. Some days, I can walk that with no problem. But I was sore before I started, and I should have listened to myself.

Pain kept getting worse, I kept ignoring it. But eventually (luckily when I was only maybe a third of a mile from home) my right hip started pretty severely subluxating (kind of partially popping out of the socket.) Probably the worst it’s done it. I ended up using my hand to apply pressure literally to hold it in place while I walked. About a block from home, I was applying so much pressure to keep it in place that my shoulder started to feel like it was going to pull out of the socket, too. That’s new.

I ended up having to sit outside for an hour after I got home because I did not think I could make it up the stairs.

And now today, I’m probably house-ridden. I can’t go kayak. There is no way I can get it on and off my car and carry it to the water. Even just walking downstairs from my apartment on the third floor is probably going to be fairly insufferable.

Almost all of the things I enjoy in life require mobility. I hike. I kayak. I camp. I built stuff. I garden. And most days, I don’t dwell too much on my deteriorating joints. I can see through the clouds, and think of all the ways I can still keep doing these things even if my joints get really bad. But some days, it’s really hard not to just want to accept that I’m going to lose access to my passions.

On top of that, I’m now facing the possibility of a serious lung issue. This one might be nothing. I won’t know for a few weeks at least.

I have not had serious lung issues in the past. I don’t have asthma or anything like that. I’ve always been a bit easily winded, but more the “dang I’m out of shape” kind and not the “something is seriously wrong” kind. I remember three distinct occasions of having what I thought was an asthma attack, but each time was when I was pushing myself way too hard while being physically active so it’s easy to ride them off. The last few years I’ve developed some sleep breathing issues, some kind of apnea, but it’s intermittent. I’ve gotten really phlegmy the last few years too, but I mostly chock that up to allergies.

A few weeks ago, while looking through some old family history stuff, I noticed that under my maternal grandmother and my maternal grandfather was a note that said “Alpha-1” with no other information. I didn’t know what that was, I guess I had not looked it up in the past, so I did on this occasion. Alpha-1 in this context is the short version of “alpha-1 antitrypsin deficiency.” I’m still wrapping my head around all of the details, but in short, it’s a defective serpina1 gene that causes your liver to produce defective AAT proteins. AAT proteins serve a specific purpose, and that is helping your lungs fight off infection and heal from damage. The defective proteins can not escape the liver and build up in there, which can result in liver problems. And that means they can’t reach your lungs, which results in lung problems. Some issues can start off early in life, but most symptoms do not begin until your 30’s. (I am currently 34.)

I asked my mother if she had any more information about this, so she looked up the results from the genetic test (just one of those mail in ‘discover your family history!’ tests) she had done for her and my father. It lists both her and my father as carriers.

This means that their offspring have a 25% chance of not being a carrier (not inheriting any defective serpina1 gene,) a 50% of being a carrier (inheriting one copy of the defective gene,) and a 25% of having alpha-1 antitrypsin deficiency (inheriting two defective copies.)

There are a few different ways the gene can be defective, so there’s more to it than that. Depending on which genes you get, carriers can also have symptoms and face illness. If you straight up have alpha-1 antitrypsin deficiency, you’re likely to face lung issues, and possibly liver issues. Sometimes serious.

My grandmother had terrible emphysema, she died from it in her 60’s. She could barely walk from the kitchen to the bedroom. I was very close with my grandmother, and the thought of being in that condition in my 60’s is horrifying to me. I really, really struggle with the idea of being non-self-sufficient. It’s a nightmare for me. So this whole situation has really gotten in my head.

My mother, a carrier, also has serious lung issues. That said, she also had lung cancer, so it’s really impossible to say what role alpha-1 could play in her repeated lung infections and emphysema.

Reading more about the disease, I learned that infants who inherit alpha-1 antitrypsin deficiency are often born jaundiced. Now, infants can be born jaundiced for a lot of reasons, but the fact that I was in fact born severely jaundiced certainly isn’t reassuring here.

You can get a blood test to check for AAT levels in your blood. This is not a test for alpha-1 antitrypsin deficiency, as AAT levels tend to decrease over time with alpha-1. I could have normal levels now and still have alpha-1 antitrypsin deficiency. It doesn’t check the shape of the proteins, just how much is floatin’ around in there. But anxiety won over so I ordered lab work (hey, for $50 it seemed worth the potential to ease my panic about mortality.)

Normal AAT levels, based on the source you’re looking at, can range anywhere from 75mg/dL to 300ish. When specifically looking at Alpha-1 patients, anything under 80mg/dL is considered serious cause for concern. So, that said, I was not particularly comforted when mine came back at a level of 88mg/dL, though it’s certainly not low enough to be a definitive result.

Luckily, thanks to my family history and current sleep apnea issues, I actually qualified for free complete genetic testing for Alpha-1 through a research study. I sent in my blood sample a few weeks ago, and they say it takes up to 8 weeks to process and sent out the results. So I’m sitting in limbo right now on that one, but at least I will have some definitive answers either way. That means a lot to me with my ambiguous history.

Even if I do have full blown alpha-1, it doesn’t bode terrible – If I can afford treatment. You can get infusions of the missing protein weekly and that’ll keep everything on the right track. I don’t have insurance and I live in the United States so, uh, yeah.

So what this all comes down to, is that I’m kind of facing my mortality for the first time in my life. The possibility that I am going to be very sick, that I’m going to keep falling apart, that I might not be able to be self-sufficient in 20 years, maybe 10 years, who knows. And I am really struggling with this idea right now.

My approach is not to be conservative with my health. My approach is to push myself hard, stay as active as I can, and do all the stupid shit I want to do now in case I can’t do it later. Fuck it.

I should probably go out kayaking today.

I’m forgettable.

I don’t mean that as a plea for attention or reassurance; In fact, it’s a trait I’ve more or less worked to cultivate. I’ve always tried to make myself small, to stay out of the way, to avoid making a scene. Anxiety rules my life, and the easiest way to avoid an anxious situation is to be unremarkable and unnoticed.

I also spent fourteen years with an EXTREMELY memorable partner. Before then, I had a series of boyfriends who were equally popular. If you met my last partner once, you remembered him forever. He took up space. He looked very recognizable. He was just memorable. It was something that I for the most part appreciated, I could use him as a social shield. But it also contributed to a problem I’d already been facing when I got in to that relationship – A lacking sense of self. Everyone in our social circle, every stranger we met, everyone remembered him, and I was “his wife.” I didn’t really have any identity of my own to those people.

So much so, that when he wasn’t with me, people did not recognize me. Even people I’d met multiple times. This did start to get to me after a while. If someone did recognize me, they’d say “Hey! You’re such-and-such’s wife!” It started to become a source of frustration after a while.

I don’t think about that much anymore, I don’t encounter people who do that much anymore. I think the people that would have said that have since forgotten me, which is ok. I don’t remember them either. I’ve probably bumped in to plenty of people I’ve met before and didn’t have a clue. On a few occasions, I’d meet someone I’m certain I’d met before, but they didn’t place me at all. I was a stranger. That’s ok.

I thought about it today though. My neighborhood has a yearly festival, and it’s big. We did not have one the past two years due to Covid, but today was the first day of the festival again. In the past, when we’d walk around, we’d get stopped over and over again by people wanting to catch up. I did not remember most of these people, and they only knew me by association, but they’d see by husband and instantly recognize him.

Today, I walked around for hours, and I did not recognize anyone. And nobody recognized me. Only one person noticed me, a friend and client of mine, and I was excited to catch up briefly. But as I wandered, I wondered how many of these people I’d met before and did not remember, how many had met me but no longer remembered me.

Dwelling on that stirred up some uncomfortable feelings, and normally when I start typing I can place them and analyze them, but it’s not really coming to me here. I’d very intentionally cultivated this easy to forget identity, but I’ve also never been alone. It’s always been like I was a moon orbiting a much stronger force, but that ability to be completely unseen and unnoticed really sits differently when you’re always alone.

I don’t think I’ve ever felt remorse about being unmemorable, it’s been a great comfort in the past. But it’s not sitting as comfortably as it used to. I’m starting to feel sad by the idea that nobody would remember me if I was gone. I’m starting to really dwell on what about me is so unremarkable. When you say something like that, people who care about you will come out of the woodwork to tell you all of the amazing things about you, but I dwell on how many other people offer the same things they’re praising about me. How long my loss would leave a hole in them if I vanished, when so many other people can easily fill that void.

That desire to be unnoticed comes from a desire to avoid obligations. Obligations are my major source of stress, of anxiety. A fear of letting people down is easy to avoid if nobody asks you for anything. And I don’t want to change that, I don’t think my mental health is at a point where I can take adding more obligations to my life without the stress overwhelming me. I’m not sure it ever will be, some people just can’t deal with some things and that’s a thing I struggle with. But that makes me further dwell – I am only known for what I can provide to other people? Is that how it works for everyone? I can’t imagine so, I dwell on many, many people from the past who had nothing to offer me. But when I think of the holes I would leave, I mostly think of my coworkers. Of the burden that would cause in my workplace. Half of the people at my funeral would be coworkers, and even then, they’d mostly be there out of a sense of obligation.

I hate ‘relationships by obligation.’ The idea that you’re maintaining a bond due to guilt, or because you may need something from the other party, or because you know it’s expected of you. Even with family, I’ve always thought that was bullshit. When I think people maintain a connection with me for a reason like that, I cut them out. I burn that bridge, I don’t want it.

I don’t know what I hoped to achieve by writing these thoughts down. I guess I was hoping to have some revelations. Or at least trying to sooth the anxiety attack that’s been slowly creeping up my throat all day about not being wanted by anyone around me. I don’t think it’s served any cathartic purpose though. Maybe I can look back on it later and form some new thoughts.

I wonder if any of the people from my past who I still dwell on spare me a thought on occasion. I have to become ok with the fact that I’ll never know the answer to that.

I used to journal and blog everything. Every thought, every feeling. I’ve never really had an internal monologue – In order to process things, and in order to remember things, I have to either say them or write them.

The problem with me (as if there were just one, and this was it. That would be nice) is that I can’t really spread myself over multiple methods of expression when it comes to this. I can blog everything. I can paper journal everything. I can say everything. I really just use one of those methods at a time though.

Writing it all down in journals was my preferred method for most of my life, I never for a moment did not have something to write in on my person through most of school, elementary through college. I wrote EVERYTHING. Long streams of fiction, accounts of events, theories and ideas and just every thought I had. I’d go through dozens of journals in a year.

Unfortunately, on more than one occasion, someone important in my life had decided to go ahead and flip through the pages of my personal journals without my permission and then used those thoughts and feelings against me. After a while, the behavior of writing everything down became punished enough that I stopped doing it.

My outlet switched mostly to telling my friend everything. Which is cool, I get feedback! But after a while I realized that it had stopped being a form of communication, and more that I was just blogging in a chat instead of some wordpress-esque medium, which then obligated the other party to spend their time and resources reading and responding. It’s great to share important things and ask for feedback, but that’s not what I was doing. I was just constantly info-dumping and that’s kind of a dick move.

I’ve been working very, very hard the last few years at learning to seek less validation, and just being content existing for the sake of it without trying to find some purpose. It’s a work in progress, but I’ve made a lot of progress. One of the areas I have failed to make any progress is this constant info-dumping on other people. So I think I’m going to go back to blogging, and see if maybe that helps me keep my dialogs a little more internally focused. (I figure if I don’t really share the blog, it counts as internal, right?)

I figure I’ll dump all the deep thoughts and rants I have that don’t risk somehow fucking me over if the wrong person reads them here, and I’ll save my info-dump vent-sessions to my friends for the more sensitive things I’d rather not have people stumble on.

tw: abortion, pregnancy, miscarriages, hospital staff being dillweeds, etc.

This is a copy/paste of the original post I wrote in October 2015 after my ectopic pregnancy. I’m moving it here to keep it somewhere safe.

About that time I almost died.

I remember everything prior to surgery, but my memory is a bit sketchy after – There was a lot of morphine, oxycodone and other things in my system. I decided I should write down a complete detail of everything I remember, so I can look back on it in the future. It’s probably not a 100% accurate account, considering all of the narcotics and pain involved.

I did not mention exactly what was wrong with me when talking to friends or posting online, though it was probably obvious to most. I did not mention it not because of shame or embarrassment, but because I did not want the special brand of sympathy that tends to come along with it.

So, here’s the whole story.

My body has always acted a bit funny. I generally just refer to myself as ‘sickly,’ because it’s hard to articulate what works right and what doesn’t. I frequently go through weeks of stomach issues, extra periods or missed periods, days of vertigo… What-have-you. Things were a little more off than usual in September. I had a ‘stomach bug’ at the beginning of September that caused sharp violent pain; Which two people I know also had, so even though I didn’t feel like it was a stomach bug, I quickly accepted it must be. I had been getting spots of heart palpitations when I was laying down, which was a bit odd. My period also came a bit late, and wasn’t quite right. Still nothing odd enough to really tip me off. My period should have started again at the beginning of October. I don’t have unprotected sex, and I don’t have sex very often at all either way. But I air on the side of caution, and remembering my weird pain at the beginning of September, a weird period and then a late one I decided to take a pregnancy test just to be on the safe side. I think this was on Friday, October 2^nd.

Positive. Well, fuck. That’s just peachy.

At this point, I should mention that the reason this part is left out of my recounting online of the events that happened, is that it changes the sympathy received from ‘Oh man, that sucks, glad you’re alive!’ to “oh god I’m so sorry.” I hate to sound callous, but I had no attachment to whatever was inside of me. And I did not want that kind of sympathy to start giving me a reason to be depressed, when I wasn’t before. I was, and still am not, in any form of emotional distress. I like it that way. But anyway.

I had an appointment at Planned Parenthood scheduled for my first day off work, Thursday, Oct. 8^th. To confirm the situation, and figure out what the plan was from there. I wasn’t going to talk to anyone about it until after that. Mostly because I suspected something weird was going on. Something about sharp pains and menstruating while pregnant didn’t seem right, and I wanted to figure out exactly what was going on inside of me and what my plan was before I started talking. So, going in to Thursday, I hadn’t mentioned to anyone my potential situation.

Thursday morning, I woke up a bit before Jason went to work. I typically lay in bed for a while when I wake up, acclimating to the day. I happily stayed under the covers until about 8AM, after Jason had left for work. At that point, my dog was getting irritated that I was still in bed. I got up and wandered over to my keurig, made myself a cup of coffee, took the dog out, reclaimed my cup from the kitchen and went to my computer desk. No sooner did my butt hit my computer chair, I suddenly felt like I needed to vomit. I didn’t find this concerning, considering the news I had learned a bit earlier and the fact that sometimes I just throw up.

I stood up, started to walk to the bathroom… And made it to the door of my office before everything suddenly started to go black in my vision. Well, that’s new. I stumbled to the bathroom, and pretty promptly collapsed on the floor. I laid their for about 20 seconds, and started to feel normal again. Thought maybe I had stood up too fast. I started to sit up, and before my shoulders were even off the floor, everything quickly started to go black again and my gag reflex immediately kicked up. Back down I went. I replayed this a few times, hoping for a different outcome. At this point, time wasn’t really clicking right in my head so I’m unsure of how long I laid there. I think after about 3 or 4 minutes, I decided something was seriously wrong and was not going away. I couldn’t get off the floor though, had no phone nearby and nobody home to yell to so I was in an awkward position. It was about 10 minutes-ish after my initial walk to the bathroom that I had formulated my plan.

I’m not saying it was a great plan, but I didn’t have a lot of options here.

I figured that since I started to black out the second I was off the floor, time was a bigger issue than distance. I decided to, as quickly as I could, stand up and RUN to my phone in the bedroom. This was a good choice. As soon as I stood up, everything was going black. I ignored it, and successfully made the run to the bedroom. As soon as my hand was on my phone, I intentionally collapsed in hopes of staying awake before inevitable unconsciousness set in. I wasn’t in a panic at this point, and I wasn’t in pain. I was just in a desperate situation, and as calmly and logically as I could trying to get myself out of it. I knew I needed to get to a hospital, and at this point was thinking that if I went unconscious, I probably wasn’t waking up again. My subconscious knew what was going on, because I shortly after learned that was in fact the case.

My doors were locked, my dog was out, and I knew I didn’t have enough steam to get the dog locked up and go open doors. I was concerned that if I called an ambulance, they would then have to call the dog warden because there was no way Barsky was letting them in the house while I was home alone and clearly sick. It would have taken time and possibly ut my dog in danger. I decided it would be quicker for me to call family. Less logically, I called my mom. While I now realize this didn’t make the most sense, I was concerned that if I called Jason, it would turn out that I was exaggerating and everything was fine and he left work for nothing and he was going to get in trouble because it was a new job and blah blah blah. Obviously not the brightest thought process, but knowing my mother was likely at home and had no immediate plans, I called her. She rushed over, but on the drive while on the phone with me did in fact point out that she didn’t have keys to my house. I hadn’t thought of that in my slightly confused state. I managed to, in the same fashion I had earlier retrieved my phone, run to the door and unlock it. I even managed to get back to the couch, after a brief lay in the doorway.

After a few moments on the couch, panic finally started to sink in. I was losing feeling in my limbs. My lips were cold. I started to shake and cry. At this point, I then called Jason anyway, so that was a lot of unnecessary theatrics for nothing earlier. In my defense, I was slightly dying and I think that’s plenty enough reason to not make logical choices.

Jason is not a worrier, and very down to earth. A no-nonsense, tell-it-like-it-is chap. He got home before my mother, and as soon as he saw me the look of serious concern on his face told me I must look like absolute shit. I laid there for a moment, told him my mother was on the way and we should wait for her since she’s almost here. He left to go pull the car around to the closest point to where I was. Came back in, looked at how I was laying with my feet up and asked if I needed to keep my feet up. I said “I think so. I don’t think I have enough blood” or something like that.

And without much concern to my opinion on the matter, he picked me up, walked me to the car, and off we went. He called my mother to let her know that we had left to Toledo Hospital already. I couldn’t sit, but luckily we have a station wagon so I curled up in the fetal position in the back. He was right to get me there ASAP. Good times.

A few minutes later, we were at the hospital. At this point, I’m still half thinking I’m just being silly. I’ve been to the ER a few times in the past couple of years and the last time, I felt more dire than I did now and I still had to sit in the ER for an hour while shaking and sobbing uncontrollably. That didn’t happen this time. They came out to get me from the car, put me in a wheelchair, and rolled me straight to a room. While moving me, they asked what was wrong. And I told them exactly what I had at that point decided.

“I think I have an ectopic pregnancy.”

There was no pause of silence, no moment of calm from this point to the point I went in to surgery. Within minutes, I had multiple IVs. I had a doctor, and a few nurses/specialists in the room with me. A few minutes after getting there, a doctor said “I think you’re right, I think you have an ectopic pregnancy.” They couldn’t see anything on the ultrasound and didn’t know where the bleed was, just that there was a bleed. They confirmed my pregnancy, sent blood off with the highest urgency, and started pumping blood in to me before they even knew my blood type. My blood pressure was low – I don’t recall exactly, but my husband says it was around 65/35. Which, according to The Internet, is… bad. It isn’t even on blood pressure charts.

My mother was kind enough to sit there and take photos of me. She’s not much for worrying. I may have been a little pale.

I had a hemorrhage. My abdomen was full of blood. My body was in shock, and things were shutting down to keep my heart beating. Doctors were running in and out. I… Was just being me. I made an awesome bad joke about ringers lactate and nobody laughed. I think I tried to fist bump a nurse for something. Had a lovely talk with a nurse with pink hair about why her hair was pink. Turns our her autistic son drew a picture of her as a super hero with pink hair, and she loved it so much she dyed it pink. I sang the emergency theme music. Normal Katy stuff. That’s what I do when under stress; Try my absolute hardest to act normal. At this point, things were starting to hurt. I started getting sharp cramps and pain in my abdomen. I had sort of decided way back on the bathroom floor that if I went unconscious, I wasn’t going to wake up. I was even more sure of that at this point. They were waiting for room for me in surgery. The doctor cheered me up my telling me that I was Priority #1, I was more important than anyone else in the hospital as far as surgery was concerned. So that’s cool. I definitely felt special, and I felt well cared for. I felt like I was in good hands. At some point here they also told me that they figured out my blood was B+, so they were switching me from trauma blood to B- blood or something like that.

At some point, still battling myself on whether I was actually dying, or whether I was just being silly, I asked a doctor “So.. How life threatening is this? Slightly? Very?” and he said “Very. Very life threatening. You need surgery, right now. Every minute counts right now” or something of that nature. That was reassuring. At least I wasn’t crazy. Someone, maybe my mother, had asked how long I’d be in surgery. They guessed a half hour.

At some point, I also informed the doctor I couldn’t remember his name so I was calling him Doctor Brackett from that point on.

I have no idea how long I was there. It felt like 15 minutes, but I suspect it may have been closer to an hour. Near the end, I kept falling asleep and waking again, and I’m not entirely sure how long these down spells were. But from my perspective, soon after my arrival, they were wheeling me up to surgery. I was still pretty chipper, despite just presuming I was dying at this point. It’s good to know that when faced with death, my outlook is ‘meh.’ I certainly wanted to be alive, but I decided being positive and upbeat was probably going to help me a lot more than freaking out would.

… It went downhill when I realized that hospitals have elevators. As anyone who has been in an elevator with me might know, I’m quite scared of elevators. I’ll use them, but only as a last resort. I’d rather climb stairs with crutches. I tend to get in the corner and hold on to rails with a nervous look on my face. In this grand scheme of confusion and pain and shock, that’s what pushed me over the edge. My heart started to feel racy and weak, and I started to hurt BADLY now. I lost my composure, and started to get a bit mean. I demanded they knock me out, because things were becoming unbearably painful very rapidly. And I thought “Well, at least if I’m going to die I want to be unconscious when it’s happening.” A doctor went to take my lip ring out, and I took it out for him because I was in a hurry to not be awake. I was quite spunky for being near death. And I hadn’t even had my morning coffee!

So, up until that point, the visuals were pretty clear in my head. Down I went. I don’t remember waking up, or what order things really happened after that.

I woke up in Intensive Care. I know I asked questions. I asked how long I was in surgery (an hour or more, I think was the answer.) I asked what my blood pressure had gotten down to (the previously mentioned 65/35-ish.) Someone, I think a nurse, volunteered the information that they had removed over two liters of blood from my abdominal cavity. I thought that was pretty impressive. They had to remove my left fallopian tube, and maybe my ovary. I don’t remember. I’ll ask at my follow up appointment on Wednesday. They had given me three units (or 3 liters, but I think it was units. I could have sworn they said liters, but that doesn’t make a lot of sense looking back) of blood, and many more of saline.

I was… Slightly less yellow now.

It was extremely difficult to breathe from the start, which I worried was abnormal. Why would removing some reproductive bits effect my lung? After some poking and prodding, they said there was probably quite a bit of air pushing up against my diaphragm, causing differed pain. That was the worse. The drugs made everything else feel fine, I wasn’t aware of any pain in my abdomen. Every breath hurt though. That sucked. That day and evening in the ISO was pretty much blurry and no longer in my memory. I had plenty of visitors, to which I was thankful. I think I made that bad ringers lactate joke again (essentially, any time someone said ‘they put you through the ringer’ or something similar, I said “YOU MEAN THE LACTATE RINGERS?” and that happened like two or three times. Give me a break, I was drugged and watch a lot of Emergency.)

Day two, I remember a bit better. I was in ISO all day again. I accidentally offended a nurse so badly with my pro-choice jargon she got me a new nurse. In my defense, she was making a lot of assumptions about how I felt at the time. A preacher came to see me too. At this point I asked a nurse what the deal was and she noticed that I had an incorrect religious preference on file, and changed it to atheist for me. That was special. I think Jason might have been there for part or all of that.

They were still pumping drugs in to me. I don’t remember what was when, but throughout the day I had morphine, roxycodone, fentanyl, motrin, and percocet. And, unlike the first day where my lungs were the only thing that hurt, today nothing helped. My lungs were still horribly painful, and now my abdomen was also horribly painful. It got worse as the day went on. The only thing that made any difference was the fentanyl, and only for about ten minutes after they put it in my IV. I probably was pretty annoying at this point, because I was paging every 30 minutes to tell them how much pain I was in and getting upset when they couldn’t help me. I actually apologized to two nurses later for being kind of a bitch. I told them I knew they couldn’t give me anything else, but I still felt they needed to know how bad it hurt. They forgave me.

Sometime on day 3, they decided they were moving me out of the ICU. They needed me to sit up though. THAT is, without a doubt, the most scared I had been. Even very slight movement; Moving my leg over an inch or trying to lift my shoulder off the bed, was near excruciating. I have a high pain tolerance. Reading this probably doesn’t indicate that, but I do. And I mean excruciating. Due to ‘moving organs around’ and the air in my abdominal cavity, I was in worse pain than they expected. But I had built up enough trust with the nurses caring for me, that I believed them when they said it was imperative that I sit up. I was a clot risk, staying still greatly increases chances for clots. And the longer I stayed down, the more it was going to hurt when I got up. And I told them I believed them, but I was still mortified. I kicked all of my visitors out because I don’t like people to see me in pain.

… And up I went. And I don’t think I’ve ever hurt that bad in my entire life. When they tell you to rate your pain on a scale of 1 to 10 where 10 is the worst pain you have ever experienced, that became my 10. I can’t even tell you. I think I screamed. I definitely sobbed a bit. If anything gives me nightmares or stays with me from this entire ordeal, that was it. I pushed through it, I stood up, and I went and sat in the chair they wanted me to sit in. I am so glad that these were nurses that had been caring for me for the last 8 hours, because without that trust I would not have believed them for a second that everything in my abdomen did NOT in fact just rip open and I was NOT in fact about to keel over dead.

… But enough about that. It sucked, let’s move on.

The story after that gets a lot more boring. They were having trouble keeping my hemoglobin up (their goal was above 11, mine were hanging out around 7. I don’t know what that means.) Two more units of blood fixed that. Most of the staff was delightful, but once I was moved to a regular care ward the level of care definitely wasn’t great. I had a few good nurses, and a few bad ones. They did a CT scan, and while I was very slowly laying myself down the CT technician accidentally pulled my pillow out from under my arm and I fell. So that hurt like hell. Another doctor told me I still had some internal bleeding, and that it wasn’t a serious concern but that they needed to monitor it and could not release me until it resolved.

I had one really bad encounter with a doctor on day 3 – I had not seen her before, and she walked in to my room while I was in pain, and told me (not asked, and did not give me an opportunity to speak back) that they were switching me off narcotic painkillers due to my nausea, but since everything else was great and I wasn’t in pain and there were no complications they’d be discharging me today. That was all very confusing, because A.) I wasn’t having nausea problems,  B.) I was in pretty bad pain and had terrible double vision, C.) Last I had heard my hemoglobin was still way to low, D.) Not 15 minutes before a nurse had confirmed I had a bad UTI that we hadn’t started meds or treatment for, and E.) Someone had also just told me I still had internal bleeding. There were two nurses in the room at this time, and this was so confusing that they both looked absolutely flabbergasted. The doctor rushed out of the room as quickly as she had come in, and one nurse immediately ran after her. The second nurse just said “You are NOT ready to be discharged. If someone tries to discharge you today, SAY NO.” and then also left. If that tells you something.

Did she have the wrong chart? Was she just not listening when nurses were catching her up on my case? Who knows. I certainly don’t. But the first nurse that had chased her off came back a short while later, and informed me that I now have a new doctor. That was all very unsettling.

I did manage to eat half a fruit cup on day 3 (Saturday) though, which was the first food I’d had since Wednesday. And I could open my eyes all the way which was nice. Thanks to the low hemoglobin levels, I was still suffering from extreme vertigo and double vision. That was lovely.

And I had some very frustrating confusion with pain meds on days 3 and 4. I was in pain, and hadn’t (expect forpart of the second day where I was just feeling horrible) said that it was unbearable, or that I wanted them to change something. It’s normal to be in pain. When they asked about my pain, I told them it was holding steady around a 3-4 on the scale we had talked about and that I could tolerate that fine, but almost like clockwork about 3.5 hours after my percocet dose it would jump up to 6-7. That held true through day three. Part way through day 3, the above bad doctor thing happened during that half-hour window of pain between the percocet wearing off and me being able to take it again, and after that my med delivery started to get kind of random. Day four, new nursing staff and new doctors, they kept changing my meds around or not giving me meds when I was due or changing my dosage. It must have happened at least three or four times. I kept asking why, but they kept not giving me answers. At one point, I paged for my percocet after four hours (I was told to take it every four hours,) and the nurse never came. I pages two more time. After two HOURS of being overdue and being in pretty serious pain at this point, I walked (which I shouldn’t have been doing unassisted) to the counter and told them I was two hours overdue for pain and was in pretty horrible pain. This was after about 16-20 hours of really inconsistent care and a new med or amount each time someone came in.

I went back to my room, cried a bit, and a new nurse came in… with a motrin. This was probably about 9PM on day 4. I asked why I was not getting percocet, and she said “Well, you keep requesting medication changes and won’t take your medicine on time. We can’t help you if you can’t be consistent.” Jason was with me when that one happened, and I totally fucking lost it. My pain had climbed up to about an 8-ish on our pain scale, the worse it had been other than my sit-up moment. And I was frustrated. I yelled and sobbed at her “I HAVE NOT REQUESTED ANYTHING. I HAVE NOT REQUESTED A SINGLE CHANGE. I HAVE PAGED, EVERY TIME MY MEDS WERE DUE. YOU KEEP CHANGING THINGS, AND YOU KEEP IGNORING MY PAGES. AND NOBODY IS TELLING ME ANYTHING. I AM IN PAIN AND I AM FRUSTRATED.” or some angry stuff like that.

… That worked. I calmed myself down, and I had my disgruntled and inattentive nurses attention now. And Jason confirmed, having been with me most of the day, that I have not requested anything or complained about anything, and that every time a nurse or doctor comes in my meds have been changed and nobody would tell me why or what was going on when I asked. And for the first time since having been moved out of the ICU, someone actually listened – She apologized for all the confusion, mentioned that they’d been very short staffed the last two days (which I would normally call a deflection, but I was happy to have any insight as to why I was not being cared for other than ‘nobody cares about you,’) talked to a doctor and they put me back on my percocet every four hours. She asked me to page her 15 minutes before my meds were due, and she would personally make sure I got them. So, through the rest of that night everything was peachy and I was in a tolerable and reasonable amount of pain.

That same nurse also, at my request, went to figure out what was up with one doctor telling me I had internal bleeding and then the next telling me I didn’t. Turned out I did NOT have bleeding, but I had some pockets of blood in my abdomen and somewhere along the line someone got confused.

And the next day, day 5, they ran another blood test to confirm my hemoglobin was now staying stable, and got me ready to go. I asked, and I think my mom was with me then, some questions about post-op care – How long I should take percocet, what I should switch to, how active I should be, when can I go back to work… And was told those questions would be answered at my post-op appointment the following Wednesday. A little frustrating, but whatever. And I left, and we went home. I couldn’t walk unassisted, so spent a few days going back and fourth between my house and my mom’s house. At least my face had colors other than white and yellow at this point. Still a bit more sickly pale than normal.

Two days later, showed up to my appointment, and my doctor had scheduled it for a week later and wasn’t even in that day. A fitting end to the last confusing couple of days.

Here I am, ten days after the initial hemorrhage. I still have not received any post-op care, and have my post-op appointment THIS Wednesday (13 days after the initial admittance.) I had asked to talk to a doctor at my supposed-to-be post op, and got my wish, but she was unwilling to answer any questions about post op care since she was not my doctor. Great. Thanks to the power of the internet, I got it mostly figured out myself.

I am healing well. I can’t lift anything over a few pounds and can’t stand up completely straight. I have a 7” long horizontal incision that looks like a cesarean scar. I have some minor pain that feels like bruising more than anything else, but overall feel pretty good. Things look to be healing nicely.

I got to see some of the best of patient care, with my initial arrival and my time in the ISO, with caring and competent staff. And I got to feel absolutely neglected for a while by the not-so-intensive care ward. They had me in a post-pregnancy ward, and part of me wondered if the nurses would rather be talking to happy mothers than someone like me. At least I got to enjoy the entire hospital experience, from the best to the worse. And I’m happy to be home.

(I also lost my dream job that I had gotten just a few days prior to the situation, which sucks pretty hard. But I’m trying to ignore that for now.)

It’s been a weird week. cw: sexual assault, miscarriages, dead bodies, cops being bastards

It took me a long time to accept the trauma I had been through in my life. I had a very easy life. I had two parents who got along, and loved my brother and I dearly. We were poor, but they were young and fit and able to work hard, and grow, and succeed, and build a life. Between effort and luck, we were not poor for long. I had friends, though just a small handful. I was picked on at school, but just run of the mill teasing – Not the kind of horror stories you sometimes read about in media. My life was full of many privileges. By the time I was in junior high, we were firmly middle class. I went to one of the ‘nice’ public schools. I was able-bodied, white, and only a little weird. Nothing terrible ever happened to me.

I had not lived through enough bad things to justify the serious impact trauma had on me. I couldn’t have any real baggage. My trauma felt… unearned, like I did not deserve the right to claim it as my own. It was an insult to people who had seen “real” trauma (as I was in fact told by my ex husband, before we were even dating. that’s a piece of a whole different story.)

Trauma is strange. It’s easy to try and judge the severity of a trauma by the nature of the event. See someone get murdered? That’s a trauma. Get an arm ripped off? That’s probably a trauma. Get beat up real good? Eh, that’s kinda rough, could be a trauma. And when I looked at it that way, I felt like an impostor for being so messed up. Trauma didn’t make me this way. I just… am this way. I can’t cope with the same world everyone else can. I’m weak, I’m broken, I’m not made for life. Nobody else feels as trapped by the past with so little to be trapped by.

Trauma doesn’t work that way, though. You can’t measure it by how grand and dramatic it seems on paper. You can only measure it by the impact it’s had, and it took me a very long time to be ok with that. Someone might witness a terrible car crash and not have a mark left on their soul from it. Someone else might step on a bug and spend years anxiously watching every step they take, just in case. Trauma is weird.

Trauma has roots, too. Sometimes trauma is a seed that gets planted, and it takes time for the impact to set in. It can grow, and change, and spread out in to parts of you that you would never expect. Sometimes, it can be almost impossible to see why you are the way you are, why you do the things you do, why you feel the way you feel – That trauma has become so invasive, you can’t even see where it started. It’s just who you are.

And there’s Big Event Traumas, and there’s death-by-a-thousand-cut traumas (or ptsd and cptsd I suppose, though I’m sure it’s more complex than that,) and it can also be so difficult to understand those thousand cut traumas. Each little bit is so insignificant, you may not even remember most of them. But it accumulates, it builds, and it rewires you.

Anyway, it took a long time for me to accept most of my trauma. I’m a big pile of cptsd, and it took me a very, very long time to understand that. I grew up with undiagnosed moderate to severe combination type adhd, and parents who tried their best to make me feel better about the struggles I was going through even though they didn’t understand that I was, in fact, fundamentally different. Every challenge I had was met with love and support in the form of “this is normal, everyone goes through this, don’t worry.” It’s very difficult to see the trauma in that. All I knew was that hearing everyone went through that made me feel worse. It stung, badly, but I couldn’t articulate why at the time. And to hear over, and over, and over again, hundreds of times that everyone is dealing with the same struggles you are, and to know that it’s killing you but not even bothering everyone else, that will ruin you after a while.

Trauma is sneaky.

I had lots of death-by-a-thousand-cut traumas like that. The biggest one is that whole ‘If everyone goes through this, if everyone feels this way, if this is perfectly normal, why is everyone else thriving when I’m in agony? Am I that broken? Am I just that pathetic? That bad at life?’ one, but that was still just part of a big, complex mess I was in.

There’s a lot of things like that. I didn’t mean for this to be a documentation of all my trauma, I just wanted to illustrate the point when it comes to those little things. I remember a lot of them. I think, as an adult looking back, it’s important to really consider what it is you remember. You don’t remember things for no reason, or at least I don’t. I remember things because they were tied to strong feelings at the time. If something seemingly mundane is burned in to my mind, there’s a good reason. That’s where I started trying to lay the groundwork for tracing my trauma, and figuring out where those roots go. It took a long time to start connecting dots. So many things seemed so unrelated. But some things were obvious, I could remember exactly what part stung.

I’m not sure where I’m going here, I just needed to talk about trauma.

CPTSD is most of my deal. It’s my entire personality. It’s almost all of me. I have no idea who I would be if none of these little things happened. But I have some big traumas too, and those are a lot easier to understand and track. They can still grow some strange, invasive little roots though.

There are medium traumas, too. Single traumatic events you can recognize, that you are often reminded of, but they don’t completely mess you up. Get enough of those though, and that can be hard to deal with. But what I actually wanted to write down and put in to words is some bits about Big Trauma.

I have three Really Big Traumas. And while I am sure this is not the case with all Big Traumas, mine happen to have some medium traumas swept up in them. On one case, a lot of small and medium traumas escalated in to the Big Trauma, and in another, the Big Trauma kept getting poked at and prodded and triggered and everything just got swept up in the masses.

I really struggle to talk about the first big trauma, though I can think about it fluidly and pick it apart now. I do not like to feel like a victim, at all. It’s not my jam. I was 16 when I had my first real relationship, and it was just a bad scene. Six months of systematically breaking down my self esteem and any belief that I had value, rather effectively. I don’t even think he knew he was doing it, it was second nature. And, as one might joke for the sake of only being able to talk about it in a light-hearted fashion because they can’t accept the things that have happened to them, this was all of course an attempt to get in my pants. Ah, a tale as old as time. Luckily, I learned in that relationship that I do actually have a breaking point. You pull on to desperately-attempting-to-de-escalate street, exit on to pleading crying hysterics avenue, take a turn down hardcore dissociation street, and it turns out eventually that dead ends in to Absolutely Lose Your Shit And Punch The Guy Taking Off Your Pants. Anyway, still enough to absolutely fuck me up for life in ways I’m still learning about.

Then we had my big adventure in ectopic pregnancy, but that was at least a very simple trauma. It was almost entirely a physical trauma. I know for most people that would be an emotional situation, but like I said, trauma is weird. That one will sometimes trigger me if I have a weird pain or if my body does something strange, but the trigger is a very physical “I am about to die” feeling and not a bunch of turmoil or shit worth writing about.

The last, most recent one was finding a dead body in a river, which hey, at least that one is easy to explain. That one was particularly unfair, because it was definitely a trauma, but it did not need to be as traumatic as it was. The actual event was fucked up, but it didn’t scar me badly. It pissed me off, made me hate cops very badly, made me feel the weight of the massive injustice done to the family of the victim I found (he was missing for months and they family were pretty sure he was in that river, the cops just made no effort to find him. Oh, also, they’re the ones who chased him in there but whose keeping track, right?) But it could have just been a sad story in a paper and a thing that weighed on me from time to time.

No, what made that a Great Big Trauma was my ex. We found those remains while working to clean up a river blockage from our kayaks. My ex was absolutely obsessed with this. I was not, but hey, it’s my job to serve and I was honestly excited we were just doing something together. You’d think after I found a body in the big blockage that would be it, but no. My ex wanted to go back almost IMMEDIETELY to keep sawing through logs, moving trash, and digging through this massive amount of debris where I had just found heavily decomposed remains. He mentioned that he wanted to go finish cleaning up the blockage, and I told him I was extremely not ok with that. He relented, and said we should at least go kayak that river again because if we put it off it’s just going to get harder the longer we wait. I more or less pleaded with him that we should not do that, but he insisted, and my desire to avoid upsetting him was stronger than whatever should have stopped me from going I guess.

So we went back to the river. And after a while, I started insisting we head back to the dock, I was getting very uneasy. He kept insisting we not, just a bit further. I got more and more distraught, he ignored it. And we got to the blockage, and then he insisted we start working on it. By that point, I was pretty much completely dissociated so I just did. We spent probably two hours there, literally right where a week before I’d found myself a few feet from a rotting human body, squinting closely at his face before I suddenly realized what I was looking at. We were digging through trash, roping off and dragging big logs, and I just spend the entire time absolutely certain that there were probably more corpses just out of sight waiting to be stirred up by our actions, just like last time. Good times.

THAT was actually the big trauma. Being forced to go back, being forced to ignore my own internal screaming to severely that my brain and body just went completely in to compliance, I was just completely broken.

We got through the blockage, kayaked a bit further, I don’t really remember how far or what was there. I do remember at one point he asked if everything was alright (he was well aware it was not, but liked to play oblivious) and when I quietly said no, he just kind of laughed it off and said “But we did it! That’s great, right?” or something like that.

I didn’t go back to the river with him again. He wanted to go again like a week later, and I did refuse. He got mad and huffy about it and went by himself. I had been so excited we had found something to do together, kayaking, after years of me having all these outdoor interests that he took no part in or interest in. And he made sure to ruin that well and good. That was three years ago.

Anyhow, I wanted to put some of these thoughts in to words because it’s been a strange week. I started taking two different anxiety meds like ~6 months ago, and they reduced a lot of my trigger responses pretty dramatically. I can have sex now which is cool, genuinely wasn’t sure I’d be able to do that again without being severely triggered. Started kayaking again. Therapy is great, but sometimes meds really are what you need.

But it’s been a strange week. I’m single and pretty ok with that, I’m casually seeing someone I’m quite fond of and that’s satisfying enough for me right now, but I’m a glutton for torturing myself so I sometimes scroll through dating apps more or less to think about how all these people would never be interested in me. Yeah, that’s not super healthy, but that isn’t the point. Sometimes it’s an ego boost too though, it’s not all bad! Plenty of people seem interested in me. I don’t talk to any of them, I don’t actually want to. I’m good where I’m at, don’t need any more socializing in my life. But it’s nice to know there is a market out there for traumatized neurodivergent weirdos like me.

Anyhow, I made a tinder account which is an app I’d never bothered to use since it’s mostly for hookups anyhow which, as a person who is pretty often triggered by sex, not an ideal platform. Almost immediately got a like on my profile, and t he first person who liked my profile was… my first shitty rapist boyfriend from back in high school. I’ve gone to great lengths to avoid thinking about him for, uh, almost 20 years. So that was weird. And as soon as I realized it was him, I like… braced for impact. I wasn’t sure how I, how my little trauma centers, were going to react to this. Sometimes it takes time for things to soak in. No impact happened though. It was just… a thing that happened. It was almost funny. I was a bit insulted that I had to have his face burned in to my nightmares for ten years, and he didn’t even remember what I looked like! Probably barely remembers me, I was almost certainly an insignificant moment in his life. He definitely doesn’t have the balls to swipe right on me KNOWINGLY, he’s a fucking coward. So that was my response to this. It was an almost sarcastic laughing offense. How DARE. I entertained the idea of matching him to open a dialog just to say “wow, pretty offended you don’t even remember what I look like, damn” or something. It was a brief thought because I think if I actually interacted with him, that probably would push that back in to the trauma zone. But as it was, just this dumb little thing – It’s fine. I’m totally fine. I didn’t anticipate being fine. I always kind of thought if I ran in to him again, I’d go off the deep end, run him over with a car and then kill myself or something. But nah. He’s just some pathetic lonely guy on a dating app. Not worth my time caring about it. He’s not the kind of person I would give the time of day to nowadays.

I also happened to find the kayak I’d wanted this week (my ex kept both the kayaks when I left him.) So hey, now I can kayak again! And fueled by some sort of strange hubris that resulted from my previous trauma defiance a few days prior, I said fuck it – let’s go kayak on That River Where I Found A Body Once.

And I did that today. I thought to myself, I just want to test my kayak, I’ll go the other way on the river. And I went in little steps, waiting between each to see if I was about to start having heart palpitations or getting squirrely. I drove to the dock, and I sat a bit. And I carried my kayak to the dock, and I sat a bit. And I got in my kayak and waited there for a bit. And it was weird, but it was fine.

And I decided to head the direction I’d always gone. And it was weird, don’t get me wrong. But it was mostly just weird because of all these associations with my ex. It was ok though. I kept going, slowly, trying to be very aware of how my felt with the intention of turning around if anything even started feeling a little bad. But it was fine. I kept going, and going, and eventually got to the place where the blockage was.

And it was ok. The blockage was cleaned up; Last year, the city sent in crews and it was a giant effort. It had downed power lines in it. They had found another body literally a few hundred yards further back the day after I had found a body (no joke, if I had somehow MISSED the first dead body and we kept going, I STILL WOULD HAVE FOUND A DEAD BODY. ) So this place I was seeing was completely different. Clean and new.

I didn’t expect this to be a significant or healing trip, just a weird thing I was trying to prove to myself for no reason. But I sat there, in my kayak, right where that young man had laid for months until I found him. And the area was clean, the trash was gone, the signs of what had caused me so much grief were faded away. And I sat there for a long time, just absorbing everything. And I felt ok.

I eventually headed back, and I stopped at the one spot you can put out besides the dock. It leads to an abandoned lot, about five acres, with some remnants of foundation. It’s completely overgrown and derelict. My ex wanted to buy it and build a house there (which actually is a whole different story about trauma, but it’s not really important. It’s just important that this place was also significant and not great for me.) We’d hung out on the lot poking around a few times. There was an old white hard hat that we found, I took a picture of it that I still have as my computer background which is probably the only reason I remember the hat.

I decided to poke around again today, continue my weird little meditative journey of letting go of some of the toxicity I’ve held on to over this river. And I stumbled upon the hard hat again. Except this time, someone had written “HOPE” on it. I’m not sure why, but I’ll be damned if that didn’t feel a bit eerie, like someone wrote it for me to find.

I got back to the dock, loaded up my boat, and drove the short drive home. I drove home in one of the most beautiful sunsets I’ve seen in maybe years. Seemed a fitting end to this weird-ass day.