I’ve experienced this for a long time, but several years ago I met a doctor who really brought into focus what the problem was. It’s one way ableism can turn deadly, but you can’t always catch it because it sounds almost like normal medical advice.
I had a GJ-tube at the time. This is a tube that goes into one hole into your stomach, but contains two sections, one of which ends in your stomach, one of which ends in your intestines. This means that part of it winds through the inside of your stomach into your intestines. But the stoma (hole) itself is just a single gastrostomy hole.
Anyway, I had two separate and unrelated problems.
One, the part of my tube that went into my intestines was rubbing on an ulcer right over a blood vessel, so a lot of blood was coming out of the tube.
Two, a giant nasty abscess had appeared on my stoma practically overnight. Like one day it was a red spot, the next day it looked like a blister, the next day it was this giant two-inch monstrosity that had popped in several places and was oozing pus everywhere. To make matters worse, it appeared to have a hole that opened deep into the stoma, so that stomach fluid flowed into it, making it impossible to keep clean.
I was seeing a surgeon to see what, if anything, he could do about the abscess. Which, at this point, had been there for two months. (Antibiotic scripts were being mismanaged which made it last far longer than it needed to and in potentially dangerous ways, according to the infectious diseases specialist I finally managed to see after four months of this.)
His immediate response:
“I can’t do anything. Even if I could get rid of it, you’d just get another.”
This seemed like an odd statement to me. I’d had my tube for years and never had more than minor skin complications. I got compliments all the time on how well I took care of my stoma. This was the only time something like this had happened. And even if it was likely to happen again, that seemed like no reason to allow a giant painful disgusting infected pusball to fester indefinitely and get worse.
But I realized this wasn’t just his considered professional opinion when I mentioned offhand that I was soon going to get surgery to insert a separate J-tube to replace the GJ-tube and get rid of the ulcer.
“I don’t see the point in that. Even if you make one ulcer go away, getting a new tube in a new spot will just rub somewhere else and create a new ulcer.”
That’s when I realized a pattern.
And the pattern wasn’t that he actually would have said this under ordinary circumstances.
The pattern was he had already written me and my situation off as not just unfixable, but there being no point to fixing it. Then he wrote off any problems as inevitable and likely to recur.
Imagine if you took your child to the doctor for an ear infection, and were told, “We won’t treat that, he’ll get another anyway.” Yes, he probably will get another anyway. You still treat ear infections.
I’ve never gotten another abscess so far. It’s been years.
I’ve never gotten another ulcer so far. It’s been years.
But even if I did, those aren’t things you leave alone if you want to live.
And that’s the thing.
If you have a feeding tube, some people see you as half-dead already.
If you have a developmental disability, some people see you as half-dead already.
I knew a guy with a developmental disability who had to go to the emergency room for a bad infection. His communication system was limited to actions, facial expressions, and seven signs in sign language, he had spent most of his life in a state institution, he was brown, and he was a ward of the state. That makes him an unperson to most medical professionals. They told his staff, “He won’t live out the night,” without even examining him. Then they tried to walk out without ordering treatment. She had to scream at them to get him basic, simple medical treatment that would’ve been given to anyone else. He got it, he got over the infection quickly. This was at least 15 years ago and last I heard he’s still alive.
I’ve gotten it more times than I can count.
A relative has a lot of health conditions (many of which run in the family), and at one point was told there was no point in treating them because she was in her late sixties at the time. This meant to the doctors that she was likely to die soon anyway so what was the point? She had to argue that her female relatives often live into their nineties in order to get any medical care at all at times. That is not something she should’ve had to say. Her medical decisions matter no matter what the average lifespan is. She was facing a combination of age discrimination and ableism (some of her conditions are rare and complicated and they didn’t want to put in the effort of learning, and I’m sure there were assumptions about quality of life and better off dead anyway in there).
This means that in actual situations where I’m trying to do a risk-benefit analysis, it’s very hard for me to trust that the information I’m getting from doctors is accurate. Because there are situations where it really is not worth intervening to deal with something that’s gonna come back anyway. Where the treatment is more damaging than the condition. I have a few of those (including one where the condition is harmless but unslghtly and the treatment is painful and risky, for example). But when doctors act like that’s the default situation, it’s extremely hard to know if they’re telling you the truth or not.
And in the wrong situation it can kill you. Or lead to lots of work and unpleasantness and illness that could be totally avoided.
Feeding tubes are definitely one area where this happens a lot. Many doctors don’t really know a lot about feeding tubes, assume complications are the norm, and assume that anyone with a feeding tube has no quality of life worth preserving by keeping us alive anyway. That combination means they’ll assume any problems are automatic and inevitable consequences of having a feeding tube at all. That any complications shouldn’t be fixed. Either because they’ll come back right away or because they can’t be fixed at all. And that there’d be no point in fixing anything because why prolong or improve the life of someone suffering as badly as someone with a feeding tube anyway?
These are all potentially fatal assumptions. Fatal fatalism, I guess. If you have any kind of unusual medical equipment or conditions. Or if you are in any way not valued by the medical profession. Especially if you’re not valued in a way that makes them think of you as dead, half-dead, terminally ill, socially dead, better off dead, or just waiting to die. Then watch out for this like a hawk. Always think of the ear infection analogy. If you weren’t better off dead to them, would they treat this? Do they repeat this advice no matter what your actual problem is? This is not valid medical advice, this is prejudice dressed up as medical advice. And it’s an excuse not to treat you. And it could kill you. So be careful.
The thing is, on a street corner, at least someone would see what was happening to me.
(TL;DR summary at end of post in bold.)
People have this idea of hospitals. You go to the hospital and you are safe. You are looked after. Someone is taking care of you. Someone is watching to make sure you’re OK. And if you’re not OK, someone will at least try to do something.
And that’s how it sometimes goes. That’s how it has sometimes gone for me. I am not going to say I have never had a good hospital experience. I am not going to say that there are not wonderful people going way above and beyond the call of duty, working in these hospitals. Often people working thankless jobs for long hours with little pay. And still dedicating a lot of their time to try and do their best by their patients. So don’t get me wrong, I am not saying that the image of what a hospital can be at its best never happens. But there’s a dark side and I have to talk about that.
See, sometimes there are patients who don’t matter. I have been a patient who doesn’t matter. And if you’re a patient who doesn’t matter, and you are in a ward where it is OK to abuse or neglect patient who don’t matter, and you are extremely sick, you will be lucky to get out alive.
I’m a patient who doesn’t matter for a lot of reasons.
I am on a feeding tube, which already means to many medical professionals that I am dead. I am maybe physically alive to them. But to many medical professionals, and I have heard this directly, once you have tubes or a trach or anything along those lines, people will see you as a corpse who happens to be still a little too lively. Or they see you as just a step away from death waiting to die. Either way, not worth putting the time and energy into treating like a regular patient.
I also have a developmental disability which means I am not entirely human.
Most of the time I can’t speak, and that only adds to my inhumanity.
I am in so many ways an unperson.
There are other things that factor in, to larger and smaller degrees. There is everything from the way I interact socially, to the fact my gender can look ambiguous, to being fat. Lots of things add together big and small.
But they all add up to one thing: I am an unperson.
In the eyes of a lot of people, I am not a human being. Iam somewhere midway between corpse and object and eyesore. Or even just a nuisance where my existence as a living being is an actual annoyance to some people. And they would just rather I stop annoying them.
I am not saying that all people see me that way. But it doesn’t take a lot. It just takes the wrong people in the wrong places. And I have been in the wrong place at the wrong time way too many times.
So that means I’ve had experiences like the following:
I have gone to the hospital for aspiration pneumonia. I am unable to eat and have been for a while. I try to tell them that and they ignore me. They tell me people get pneumonia without eating all the time.
I get very sick from the combination of antibiotics they’re giving me. I began vomiting uncontrollably.
I have a few things to make this extremely bad. One of which is a neuromuscular condition that makes you weaker the more you use a muscle. This is violent full body vomiting. And the more it happens the weaker I get. I also have adrenal insufficiency, which means any illness will be worse, will drain your cortisol, and low cortisol causes its own life-threatening set of problems. Including full-body muscle weakness.
I am on a cardiac ward,. This is called being overflow. Overflow means you’re a patient with one thing where you get put on a ward for another thing. Because they don’t have beds on a ward with whatever specialty you’re supposed to be undder.
So I’m overflow on his cardiac ward. And cardiac wards are generally pretty quiet places. The culture of this ward is they like it quiet. At all costs, it turns out.
So their response to my vomiting is to shut the door and get my roommate out of there and ignore my call light.
But I am hitting the call light because I am getting weaker. I am unable to clean myself. I am shitting the bed. I’m having trouble breathing and I am getting so weak I will soon be unable to move.
The first couple times, they’d answered my call light. But they stopped. And I thought the ward was just busy. Because one ward gets busy sometimes. You don’t get your goal and answered for a long time because there’s something else happening more important. And it was a cardiac ward, so I thought maybe someone having heart problems.
I know there was concern over what was happening to me. But it was not coming from the hospital workers. The nurses were ignoring me. The doctor said is his official position that he would not treat anything about pneumonia because pneumonia was all I’d come in for. I didn’t know any of this until someone told me later.
See, my friend was not able to visit me. But she sent over one of her caregivers. That caregiver had been through cancer. She’d been in that hospital and had known many people who’d been in that hospital and had seen the worst of that hospital. And she came in and apparently what she saw was terrifying.
Every nurse on the ward was aware my call light was going off. Everyone knew why. I was vomiting very loudly. It was audible from the hall. My door was shut. No other lights were going off. Nobody was busy. Everyone was ignoring my existence in a very pointed way.
So the caregiver apparently started throwing my door open. And the nurses would come and shut it without saying a word. And she’d throw my door open again. And the nurses would come and shut it again. And this back-and-forth went on until the only part I remember happendd. Which is the caregiver shouting at the top of her lungs, “If you kill her, I will have every lawyer in Burlington down on this place!”
I didn’t realize this was about me. I just remember hearing it. I was at that point dealing with the combined effects of the pneumonia, the weakness from not having had a square meal in weeks already, the antibiotics and their side effects, untreated congenital myasthenic syndrome, and untreated adrenal insufficiency.
So I could barely move. I remember thinking this out: I was alone and I knew I was alone. I needed to use whatever strength I had to get into a position where I was the most likely to survive. And that meant in that moment, climbing into a very odd position on the bed.
So the hospital bed was… like a hospital bed. The top of it was tilted upward. So I climbed onto that part. Just the top of the bed. And then I curled myself so that my legs were it one side of the bed, my torso was parallel to the top of the bed with my back facing the top of the bed, and my head was angled downward. So when I became unable to move, the vomit was most likely to pour out of my mouth not end up my lungs if I could help it.
This is not a position that anyone who is in a hospital within reach of help should ever have to be in. What I had to do, and the resources I had to muster, are far more typical of someone lost in the desert using the last of their strength to preserve their energy for rescue.
There’s a show called “I Shouldn’t Be Alive” where people talk about exactly these situations. The difference between the survival stories on that show and the survival stories I could tell, is not a difference in the physical and mental lengths you take to survive in situations where it shouldn’t quite be possible. The difference is their survival stories always have that happy ending that starts in the hospital. My survival stories always start in the hospital.
And while I am in the hospital I am enduring what these people endure in the desert, in the middle of the ocean, in remote wilderness places where there is no help. And yet this is the closest I can find my experiences anywhere on TV or anywhere else. That should say a whole lot about how people like me experience hospitals.
So they did as far as I know pretty much leave me to die or survive on my own steam. Doctors have said many times I should not have survived this. Doctors have said many times that I needed to be in the ICU. I’ve been told a lot of things. But I did survive it.
But it was a grueling, traumatic, dangerous, and totally unnecessary experience. That particular hospital stay is one of the worst experiences I’ve ever had with medical care.
It was not just being left for dead. It was this long, long period where I was alone in a way I have rarely been alone. The only time I saw another human being is when they came in to change my IV bags. And I was adrift and did not know what was happening. I didn’t even know if I was dead or alive.
I was very severely delirious. I was in more pain than I can ever remember being in. I was having a kind of seizure that meant that even in the absence of all these other thing it made time crawl, time just stretched out into eternity. So I pretty much felt like I had discovered the ninth circle of hell from Dante’s Inferno or something and it was located on that particular floor of that particular hospital. When I even knew I was in the hospital.
After that experience with the curling up on the bed that was really the last lucid moment I remember. I remember wondering it one point whether when I died I was going to be aware I was dying. Because I knew that was happening. I know when Death is hanging around my hospital bed. It’s something you learn to notice if you encounter enough. And Death was really my only companion for a lot of this experience.
So I got weirdly friendly with Death. But other than that it was like I was living in some kind of nightmare that never ended. The first thing I remember after curling up like that is the light being different, day being different I guess, and not even connecting with who I was, where I was. I thought there little dapples of sunlight all over the room. I thought I was the dapples of sunlight. I thought that’s what I was, I didn’t know I was physically there. And I was all in pieces all scattered all over the room.
Pink insects ate my eyelashes. The clouds took on the form of ancient mythological creatures. These empty empty people showed up — gray black and white images of people that would appear in front of me and carry emptiness with them. They vanished and carried even more emptiness when they did. There was a grid that went through the entire hospital of all the people who died there and were stuck on the grid. They invited me to join them. I didn’t know sometimes if I’d already died and joined them. A garden trellis appeared on the back wall one of the rooms. Vines would go down in and out of it and back to it and down in and out of it and back to it all night long, covering me and uncovering me, endless time, endless pain. All these things, disjointed, not coherent.
These things don’t sound like a lot. But they came with the most excruciating pain and the sense of time passing as slowly as possible. If you can imagine when you have really bad insomnia and you can’t sleep but you can’t really concentrate on anything either, so you’re just lying there with time seeming to go by like every second is a month. Like that only more. And I was in that hospital for five weeks.
And not all of my experience that hospitalization was as bad as the start. In fact some of the neglect and abuse stopped due to other people advocating for me. But there was a long period of extreme neglect. And it was brutal.
And when I was able to think enough to make these thoughts, I was very aware of some things.
My life was in danger.
Nobody there cared that my life was in danger.
Because I was in the hospital people thought I was safe.
Nobody would know I was just in a room by myself without even a monitor.
Like usually they at least least have a pulse ox on you or something. They didn’t even have that.
And I was unable to do much for myself. Being punished for that. At one point they actually said that because I had a developmental disability, if I got used to shitting the bed I’d never want to use a toilet again. I can’t fathom what world exists where shitting the bed is preferable to a toilet. But that’s what they thought of me.
And I was being left alone for every single hour out of the day that did not involve changing an IV bag. And the people came to change the IV bags did not interact with me. Nor did they do anything check on my status.
So this was a terrible experience. But it was also an experience where I knew I was alone and I was in danger I rarely had means of getting word to anyone.
And I was in a place where people think you’re safe. So nobody would think that nobody was looking after me. Nobody would think that nobody cared that I hadn’t eaten. Nobody would think that nobody care that I got so weak I could barely breathe sometimes. Nobody would think this was happening or even that was possible for this to be happening. And there’s so much more to this story than I can even tell in one blog post. It’s actually much worse than I’ve described.
Which is exactly why I’ve said that there are times when I think I would be safer dying on the street corner then I would be safe in the hospital.
And I think that is true for many disabled people and many other people who are part of groups that are not considered fully human.
But people want so badly to believe that hospitals are a place of love and caring and safety. People don’t want to hear this is a reality for the unperson patients, the unwanted patients, the annoying patients, the difficult patients, anyone who gets labeled such. Which is often disabled people.
And yet if I talk to people who had to be in the hospital, especially people don’t matter to a lot of people with power, I hear stories like this one and worse all the time. And disabled people of all kinds have tons of stories like this and worse.
This happens. This happens all the time. It’s not just a matter of funding or something. It’s a matter of certain people’s lives are not valued and certain places have cultures where that is okay. There are cultures in some medical establishments where doctors and nurses abuse or neglect people they consider not really alive, not really people, or too annoying. Sometimes this is as simple as choosing a blunter (more painful) needle to inject someone with. Sometimes it’s as huge as leaving people to die or even doing things to hasten death.
This kind of shit happens all the time. Listen to the stories told by those of us who’ve actually survived such ordeals. Every single one of us is a real person. Every single story we tell is important. Even if it flies in the face of everything you want to believe about the safety of hospitals and the benevolence of the helping professions. What you want to believe doesn’t change that people are being made to needlessly suffer and die for not being the right kind of person.
TL;DR: Some people — often disabled people, poor people, people of color, and other people who can easily become people who don’t matter — experience severe medical discrimination in hospitals. To the point that we may be simply left to die, or given the minimum possible medical care. We may experience severe abuse and neglect in what is meant to be a place of safety. Some of us survive it. Some of us die. Some of us feel that we’d at times be safer dying on a street corner than dying in a hospital. Because in a hospital, we’re hidden in a room where nobody can see what’s happening to us except the people neglecting us. At least if we died on a street corner, someone might see what happened. Maybe.
I didn’t know the full story behind this until I talked to my doctor recently, but I do have a similar story to tell.
I have severe adrenal insufficiency. By severe, I mean that by the time they actually checked my cortisol levels, they couldn’t find enough to measure. Nor any ACTH to measure either.
There had to be some cortisol or I would’ve died. But I was already waking up nightly too weak to hold my head up, move my hand, or breathe on my own (I had a bipap with central apnea settings that saved me by going into vent mode, but the alarm would go off endlessly because even awake I couldn’t get a breath). So it was a close call by the time they found it, and I’d been aware I was headed towards dying for awhile by then.
It turns out I was tested four years earlier.
It turns out that my cortisol levels were low — not as low, but low enough they’d normally be of concern — during the test.
It turns out the woman who did the test did not bother to tell anyone this or do further testing to confirm something was wrong. Even though my health was already going to shit in a major way at the time.
Why? Because I’m fat and hairy. Basically.
She didn’t test my cortisol just randomly.
She didn’t test my cortisol because she was concerned about adrenal insufficiency.
She tested my cortisol because she looked at my body type and assumed I might have Cushing’s syndrome. Which is the opposite of adrenal insufficiency: Too much cortisol.
I have had more hair on my body than the average female for a very long time.
I have fat in my abdomen and in other areas people see as Cushing’s-esque.
I have fragile skin and stretch marks because I’m hypermobile (I’ve had them since I was a skinny kid). Nothing to do with Cushing’s. Lots of people in my family are hypermobile.
Also practically everyone in my family is hairy and has this fat distribution pattern.
None of us have Cushing’s.
I can’t fault her for checking me for Cushing’s. Generally every new gynecologist I see freaks out about my hormones until they figure out there’s not much abnormal about them.
When the test came back low on cortisol.
She didn’t tell someone.
She didn’t retest.
She didn’t order further testing such as an ACTH stimulation test.
She didn’t forward this information to other doctors.
She just thought to herself, “Well it’s not high so it’s not Cushing’s so no problem.”
Four years before I was diagnosed.
Four years before I was absolutely sure I was gonna die before they figured out what was wrong.
FOUR YEARS because I was fat and hairy and looked like every other person in my family who doesn’t have Cushing’s.
Of course given the amount of steroids I’m on now, this poses a new question — how would we tell if I developed Cushing’s from my steroids? But I assume it’s gonna be because of something other than the fact that I look like I’ve always looked.
(And apparently while I was in the hospital, an on-call doctor asked my doctors what on earth they’d done to me with the steroids. My doctors had to say I’d always looked like this.)
Just take a look at these photos for a moment:
My body type is basically exactly a shorter version of my father’s. We’re just fat hairy people who carry a lot of weight around our bellies, among other places. So are lots of people in my family. Nobody in my family has Cushing’s. As I said, it’s fine to check, prudent to check. But when the test shows the opposite, shouldn’t someone be concerned before it becomes a life-threatening medical issue?
This isn’t the only time being fat has delayed a diagnosis, either. It delayed my gastroparesis diagnosis, because they wouldn’t believe I hadn’t eaten until I was visibly not eating in the hospital and losing even more weight. I lost a total of 75 pounds before they treated the combination of gastroparesis and adrenal insufficiency that was causing the weight loss — and I was still fat after I’d lost the 75 pounds. I just weighed 170 pounds instead of 245. Still fat. Still a dangerous amount of weight to lose in a hurry.
But it looks like I’m gonna have to deal with “Are you sure this isn’t Cushing’s?” thing the rest of my life probably because I’m not gonna stop looking like this anytime soon, I’m not gonna stop taking steroids anytime soon, and because Cushing’s can be a real possibility when you’re on steroids for adrenal insufficiency.
But the amount that doctors can discriminate based on appearance — and it goes way beyond weight, especially if you add in sexism — is alarming as hell. As well as the fact that with my old gynecologist, the bias was unconscious as far as I can tell, so it’s not like she was able to say “Hey wait a minute…”
I just got over a gnarly C Diff (clostridiumdifficile) infection that lasted from approximately November until May of this year. Here’s a link to the Mayo Clinic’s page on C Diff if you want to know more about it. It wreaked havoc with my health, including my ability to absorb the steroids I depend on for survival, and I was away from home then hospitalized for a long time. I had thought C Diff was something you got only from antibiotics or contact with an infected person. I didn’t know I was at risk from other factors, especially being tube fed nothing but formula. I was wrong. I want to tell you about the risk factors that exist, especially in tube feeding and how to prevent that.
This is gonna be a little long, but there’s a bolded section at the end that basically tells you which nutrients you need to add to your diet to be more protective against C Diff if you’re on an elemental tubefeeding formula as your main source of nutrition.
The biggest risk factor for C Diff is frequent contact with the healthcare system. Antibiotics are a risk factor. So are some other medications such as acid reducers, which I have to use in large quantities because of my gastroparesis, reflux, and aspiration risk. But the one risk factor that intrigued me the most, because it fit with the onset of my symptoms, is being tube fed nothing but a tube feeding formula without supplementing it in certain ways.
All of this is reputable science, by the way. This isn’t some kind of fringe thing. So we all have little symbiotes in our bodies. That’s symbiotic bacteria that live in our guts and often help us out with all kinds of things you’d never expect. Some of our symbiotes help protect us against C Diff. I know this may gross some people out. I think it’s amazing and cool that we have little symbiotes living inside us and helping us. I want to keep my little symbiotes healthy and happy. But I might be a very strange person, I admit.
Here’s an excellent overview from the World Journal of Gastroenterology: Tube Feeding, the Microbiota, and Clostridium Difficile Infection. So basically there’s a lot of risk factors involved with tube feeding elemental formulas, like the Osmolite that is my main food. One of those us that the elemental diets seem to feed C Diff pretty well on its own. But one of those risk factors is that the elemental formulas don’t contain some of the crucial nutrients that feed the symbiotes that protect us against C Diff in the first place. And that is something you can possibly change even if your main diet still has to be an elemental formula.
I got a high-powered blender many years ago because I was having weirdly intense and specific cravings for vegetables. I got a Blendtec, other people might get a Vitamix or similar. These blenders are expensive, and mine was a gift from a family member, but they are the only way to blend down food well enough to safely pass through a J-tube. In addition to a blender, I got a chinois (a kind of heavy-duty strainer), which lets me filter out any remaining tube-clogging residue while pushing through as much thick stuff as I can. I have had no problem getting the resulting blends down my J-tube as long as I blend thoroughly and use the chinois vigorously.
Anyway, I started supplementing my Osmolite diet with blended vegetables. I just went with whatever vegetables I seemed to be craving. And they were oddly specific cravings sometimes. I’d never eaten sunchokes in my life, and suddenly I was eating sunchokes constantly. There turned out to be reasons for this most of the time. My symbiotes must’ve been yelling “We’re hungry! Feed us!” in whatever way they knew best. When I added the blenderized vegetables to my diet, I felt a strong sense of well-being and my doctors told me there are nutrients in vegetables that we don’t fully understand yet. So they were fully supportive in what I was doing.
My developmental disability services agency had people in it who were helping me cook these vegetable meals. We’d basically cook the vegetables as if it was a regular meal, then stick it in the blender with some water, then strain it through the chinois. I know a lot of people compare these sorts of things to baby food, but I honestly think a better comparison is soup. So I just called it vegetable soup. And then I would periodically put small amounts of it down my J-tube using a feeding syringe, although you could probably use a feeding bag and pump if you did it right and made sure it wouldn’t clog any tubing.
Anyway, at some point the guy who was doing most of the cooking quit to take a different job. And my access to vegetables started getting more patchy. I think the agency thought that because I was on Osmolite already, food prep for real vegetables was a luxury. We were all about to find out how wrong that was.
I didn’t connect it to the vegetables, but for a month or two of less vegetables I was feeling lousy and telling my doctor something was going wrong in my body that was gonna bite us in the ass if we didn’t work out what it was. I didn’t know I was gonna get the butt plague, mind you. I just have a good instinct sometimes about things going wrong in my body. Without further information, though, we couldn’t find anything wrong.
So the vegetables stopped around September. By November I had nasty diarrhea every day. Like shart-level diarrhea. Leading to both yeast infections and bacterial infections of the vagina just for extra fun. There’s no pretty way of describing it. The butt plague is a nasty, nasty thing.
I’ve always had some absorption issues, but the C Diff kicked those into high gear. My absorption of my meds, including steroids, became erratic. Understand: I make no cortisol in my body at all. You can’t survive without cortisol. Not being able to absorb my hydrocortisone properly or consistently played havoc with my entire body and health status in ways I couldn’t comprehend. And that’s besides the ever-fluctuating levels of seizure meds and other things that shouldn’t fluctuate.
Dehydration was obviously an issue. The dehydration kicked into high gear one week when I got about half the developmental disability staff hours I’m supposed to get, mostly through subs who didn’t know what they were doing, and didn’t get any extra water for several days. I nearly passed out, had trouble breathing, had to raise my steroids just to be able to breathe. Wildly inconsistent steroid levels even with the high doses resulted in swinging from too much to too little steroids on a dime. It got dangerous. My body temperature started going outright hypothermic (94.3 was the lowest), I had more diarrhea because low cortisol levels will do that, and when my steroids were high it suppressed my immune system and allowed the C Diff to flourish even more. It was loads of fun.
At some point I gave my doctor the Bat Signal (“I’m gonna die, this is not a drill”) and he found the C Diff quickly. The antibiotics worked and then suddenly didn’t work and I was hospitalized. I’d already been living away from home about a month at that point due to a combination of being unsafe living alone and being too stubborn to go to the hospital. (They tried to get me to go to the emergency room for about two straight months before I allowed someone to call 911.) I got really weak from a combination of dehydration, adrenal insufficiency, and congenital myasthenic syndrome, and realized I was going to pass out or fall (I have severe osteoporosis and broken bones can trigger adrenal crisis) or shit on my friend’s floor or something, so I let her call an ambulance. I was hospitalized immediately and stayed several weeks.
In the hospital there were two or three main issues to sort out. One was the C Diff itself. Another was my steroid situation. So we discovered the inconsistent absorption and I was put on steroids through my chest port instead of my feeding tube. This vastly improved things. But I was still on a much higher dose than I should’ve been. It turns out that some of my meds might affect the metabolism of steroids.
But more importantly, I probably have an additional medical condition that can come along with adrenal insufficiency (and also two other things I have), and that responds to steroids. It makes my heart race and I get out of breath when I stand up sometimes. So I’m still on an ungodly dose of steroids — transitioned back to getting them through my gut, at least, though — which puts me at continued risk for C Diff among many other nasty things. My severe osteoporosis (I’m 37, I’m told my bones are more like 95-115 depending on the bone, I’ve broken ribs by sleeping on them wrong and have a stress fracture in my spine nobody knows where it came from) is partly from the steroids. I’m at high diabetes risk. Steroids are the most dangerous meds I take and the most necessary meds I take. It’s an ugly balance to have to strike. There are no good answers and for many people with severe adrenal insufficiency it’s the steroids that keep us alive that ultimately shorten our lifespans.
Anyway, the most important thing for you to know are which nutrients your symbiotes need that you’re not getting in an elemental formula like Osmolite or Nutrin. There’s basically three important ones, although I’m sure there’s plenty of others:
You can look up which vegetables contain the most of those nutrients, and figure out how best to get them for yourself. Remember those sunchokes I was craving all the time for no apparent reason for the first time in your life? Sunchokes turn out to have more oligopolysaccharides than any other vegetable on the planet. Yeah, my symbiotes have me well-trained, I guess.
So definitely look up which vegetables you can get those things out of. And then I’d say go with a combination of that knowledge and what vegetables feel right to be eating. You might not have that this just feels right thing and that’s okay. But if you do, run with it. Every vegetable I was craving (and they were weirdly specific and intense cravings) turned out to be high in at least one of these three nutrient types. Your mileage may vary. And always check out the actual scientific information on these vegetables, your instincts are no substitute for that. But my gut instinct (no pun intended) turned out to be shockingly accurate, and you might find the same.
My doctors, for what it’s worth, are 100% supportive of my efforts to get vegetables back into my diet by any means necessary. They agree with me that this was a major risk factor in my getting a C Diff infection. And once infected, always at risk for the rest of my life. So this is a very important thing to try and prevent, even if you seem to have no symptoms. C Diff can be dangerous, is highly contagious (I was on isolation protocol my entire hospital stay even after I got over it) and can be resistant to antibiotics. Even healthy people are turning up with C Diff these days. Trust me, C Diff is something you absolutely do not want if you have any way of preventing it.
So if you remember nothing else from this post, remember those three nutrients:
Find ways to get these things into your body if at all possible. Keep your little symbiotes happy, they need you and you need them, that’s how symbiosis works! And if your symbiotes are happy, you’ll likely be happier (and healthier) too. And stand a better chance of fighting off the Dreaded Butt Plague.
This is a medication that is vital to my survival. I don’t mean indirectly. My body does not make even a little bit of a particular hormone that is necessary to survival. Without getting a replacement, I will die. There is no way around this.
There have been many complicated things preventing me from getting the right amount of this medication, throwing my health into jeopardy. Some have to do with the agency and some don’t.
But my endocrinologist recently got angry about something the agency was doing. One of the doses of the medication has to last me overnight. It has a certain time it stays in effect. You can’t change this time by wishing really hard or something.
So there was a staff shortage, and they started sending people earlier and earlier at night. A medication that was intended to be taken at 9 pm started happening as early as 5:30 or 6 pm instead on days when it was more convenient to the agency.
I started waking up with trouble breathing, and having to take more of the medication to breathe through the night.
Needless to say he wrote an order saying the nighttime dose needs to be as late as possible.
But anyway, we recently discovered a lot of things that were going wrong with this medication. Everything from the way my stomach was absorbing it, to the way my body seemed to be using it, to other conditions being affected by it, to the timing. So we had to start over. By start over I mean go through a long grueling period of figuring out how much I needed by chest port, resolving as many digestive issues as we could, working out dose conversions to my still-wonky guts, and coming up with a dose and timing schedule that will get me through the day without too many hiccups or surprises.
In order to do so, we had to throw out my agency’s schedule entirely.
See, before this, I was only getting the medication during the existing staff shifts when the people from the agency were at my house to administer medications.
And that didn’t turn out to fit the rhythms of the way this hormone works in anyone’s body, let alone mine. Like not even a little.
But we had to go with what my body would actually need.
So now I have a medication I have to take four times a day, and every single one of those times is outside of the times when I have staff over to help me administer things.
Self-administering medication without, at least, prompting and checking from an actual human being, is not something I can do. I know this. I used to have an app designed specifically for people with brain injuries and other cognitive disabilities that wasn’t good enough to nag me into doing shit like this.
Mind you, I’ve downloaded Medisafe onto my phone. But that’s a backup. It’s not sufficient. Medisafe alone, even with the thing where it texts someone if you don’t take it, isn’t enough.
And of course when my case managers come by, they’re all cheerful to tell me about how their boss told them about Medisafe.
But anyway, they were also just as eager to tell me that they as an agency were not capable of giving me the support to self-administer this one medication.
Support would, at minimum, consist of getting a phone call four times a day.
A fucking phone call.
Not someone to give it to me.
Not someone to physically be in the room.
Just someone to call, get me to initiate the whole process of doing it, and then verify that I’d done it.
They told me this is not possible. That they can’t.
I told them that I understand they think they can’t, but that I need them to know I’m fully aware that they actually mean they refuse to. Maybe not these case managers personally. I don’t know who. But failing to provide even minimal support for a life-saving medication is a refusal, not an impossibility. And I refuse to let them get off the hook for saying it’s just impossible for them to support me on this.
They do more at other times than it would take to do this.
They just — someone, somewhere, in the agency — don’t wantto provide this kind of support.
I will come up with other options, of course. I already am. I told them that if they refuse to support me on this then they need to help me find those other options at the very minimum. But that it’s absolutely, absolutely refusal. It’s not can’t, it’s won’t.
Agencies love to come up with random reasons they can’t do something when they really mean they refuse to, or don’t want to, or just plain won’t for whatever reason.
My agency seems to love to do it by reflex. Often the very first thing I hear when I ask for help with something is that it’s impossible. Even if it’s something like “Can someone plug my cell phone in at the end of the shift?”
At any rate, it’s really wonderful to hear how person-centered this agency’s services are these days. You’d think there wouldn’t be anything more person-centered than figuring out a way for someone to get life-saving medication at the times their body needs it. But person-centered appears to just mean I get the option of having a glorified social media profile stuck into my file, not that anything I get in the way of services actually revolves around what I need or want in life. Because that’d make sense.
Make no mistake about it, though: This is not something they can’t do, this is something that at some level they are refusing to do. Because the agency is set up for the convenience of the agency, not for the convenience of those of us it claims to be there to help. Which has results for us that range from annoying to life-threatening.
I don’t think Vasili Arkhipov would’ve said he couldn’t try and veto the captain’s order to nuke the Americans…
By the way, I do have every strategy currently possible in place for dealing with this situation. I have stopgap measures. I have people on my side. I’m gonna need something more than this eventually. But I don’t need suggestions or anything, so please don’t.
I’m gonna illustrate this one with another medical story.
Years ago, I needed a feeding tube. Two feeding tubes, actually. The details aren’t really important. Other than I was gonna die without the feeding tube.
The hospital didn’t want me there.
First, they told me because I had a developmental disability I would need 24/7 care from my local DD agency while in the hospital. A call from my DPA to Patient Relations fixed that massive illegal move.
Then, they tried to kick me out after a day even though I had bad aspiration pneumonia visible on a CT scan and was really sick. My pulmonologist and GP stopped them.
Then, they started coming into my room multiple times a day to try to persuade me not to get a feeding tube. They knew I needed one, so they couldn’t just deny it.. I’d been told on admission I needed one. They admitted I wouldn’t survive without one. They were trying to talk me into going home and dying. And I was weak, and I was sick, and they were wearing me down even though I was stubbornly saying I wanted the tube.
They said all kinds of things. I wouldn’t be able to take care of it. I was just like an infant and would yank it out trying to play with it. I would have no quality of life. My caregivers wouldn’t be able to cope and I’d need a nursing home. My life would essentially be over anyway. I needed to ‘consider the alternatives’ (we checked, they meant death). And this was happening multiple times a day.
So my DPA basically called in a social media campaign to get people to contact the hospital and tell them to stop discriminating on the basis of disability, and to stop pressuring me not to get a tube that was clearly medically indicated, etc.
It worked. I got my tube the next day. Grudgingly. Unnecessarily painfully. But I got it. I’ve been happily living with tubes ever since. And my care is actually easier, not harder. And I’m still alive.
But the first thing a caseworker from my DD service agency told me when I got home?
“You shouldn’t have done that. Do you understand you are jeopardizing our agency’s good relations with the hospital?”
I almost died and did what I had to do to survive. They were more worried about their agency’s social relations with a hospital that has a bad track record treating people with developmental disabilities.
Some agencies are better than others.
But when you’re a client of a developmental disability agency. You have to understand something very clearly. No matter how much people care about you as a human being on a human level. No matter how much they’ll side with you when your interests and their interest are in line…
…It’s still a rare agency office worker who will put you above the agency when push comes to shove. If there’s a conflict of interest, almost always they will side with the agency. There are exceptions. You can’t count on them. Be cautious.
A couple years ago, I was in the ICU. I had gone into status epilepticus and later stopped breathing. I was admitted for respiratory failure and diagnosed with metabolic alkalosis. They figured out why, too — loss of stomach acid due to someone putting in a kidney drain instead of a J-tube. (Other things can cause it but those were ruled out.)
Anyway, while this was happening, my DD service agency was holding one of its meetings. They always hold a meeting if I’m in the hospital. Neither me nor my DPA are invited to participate. Nor are my doctors. But they make medical decisions during these meetings, without necessarily even telling me. It’s all for my own good, they say.
I have a number of well-documented medical conditions that are known to my agency. They have been around for all my hospitalizations and emergency room trips and medical tests, and are aware of what emergencies have taken place in the past and what have not.
So after the hospital stay, I get home from the ICU. And a little while later, they tell me their nurse wants to talk to me. They say she wants to discuss with me how I’ve been feeling since my hospital stay and catch up with me. So far, so normal. I usually get along with this nurse and don’t anticipate any weirdness. But it gets weird super-fast.
She comes into my home with an agenda. It’s to get me to seek medical treatment for a condition I don’t have. (Sorry for vagueblogging, it’s a privacy issue. Suffice to say if you haven’t heard this story, you’re unlikely to know what it is.) Like a condition I’ve never had, never had a doctor say I have, never had any evidence of having, and can’t possibly be connected, even if I had it, to metabolic alkalosis.
The agenda is obvious because of a few things. One, she never asks me a single question about how I’m doing or how my hospital stay was or anything about the hospital stay at all, even though this visit is supposed to be the usual followup questions about the hospital stay. Instead, she tries to hard-sell me on treatment for something I don’t have. Any time I basically go “WTF, um, this makes no sense, because…” she just comes at me from a different angle. She is surprised, sometimes, at what I have to say on the matter, because my experiences do contradict the condition in question, and she clearly hasn’t thought of many of these things before. But it’s very clear that in her head, she’s diagnosed me with this. She’s even spoken to doctors who have never met me, about me in this regard, and is trying to persuade me to see these specific doctors. It’s creepy and weird.
So at that point I kind of know something is up, and I tell my case managers, “Hey, don’t send people to my house if their only agenda is to persuade me to do something rather than to communicate with me. I don’t know what the hell just happened there but it wasn’t cool.” I also took case managers with me to doctors’ appointments where doctors assured them I did not have the condition in question.
So nearly a year after those events, I find a weird document in my agency file. I’d been looking for a different document for my records, and someone just accidentally put this document in the pile of documents I had requested. This document was weird in several respects — it’s also the one that went on at great length about what I look like when angry — but it pretty much said I had a medical condition I don’t actually have. The same one that can’t possibly cause metabolic alkalosis.
It also went into a good deal of description of my behavior that supposedly came from what direct support staff had said about me. At that point I’d had the same direct support staff for years, so I asked them, “Have you really seen this behavior?” They not only said they hadn’t, but said they were willing to sign legal documents saying they had never seen me do any of the stuff in the document.
So I asked my case managers why the document existed, and on went a series of exhausting meetings between them, me, and my power of attorney for healthcare.
They said the document existed in order to prepare people for possible medical emergencies. They said it came into being because of a meeting they had while I was in the ICU. They said they earnestly wanted to help me with any medical problems they could, so they simply decided that I had this medical problem. Without consulting any doctor connected with my care, without consulting me, and without consulting my DPA. Because it was a medical problem where they knew what the treatment was, so it would be something easy for them to help me with. So they basically invented a medical problem I’ve never had, because they knew better what to do about it than they knew what to do with metabolic alkalosis.
The document went on to amass evidence for this medical problem that didn’t exist. Some of the evidence included outright lying about previous medical events. I say lying, and not mistaken, because the person who wrote the document was present for the medical events being documented, and one of them was the exact opposite of what he claimed it was in the document. So it is in my official records that a medical event happened — this is a matter of easily-found medical records — that is the opposite of the event that actually happened. There is then a whole lot of evidence that is either cherry-picked or entirely made up.
And then the document goes on to pretty much ignore every single medical emergency I’ve really had. The purpose of the document, supposedly, is to prepare staff for medical emergencies that might happen. The document does not do this. It goes to great lengths to describe a potential medical emergency that has never happened and likely will never happen because I don’t have the conditions that would cause it. Then it ignores several conditions that I have that are life-threatening and have already resulted in emergency room trips, hospitalizations, and other near-misses.
Worse, the actual emergencies I have, have involved certain symptoms. In some cases, those symptoms overlap with the symptoms of the medical condition I don’t have. If staff were to believe this document, they could either delay treatment for a rapidly life-threatening health emergency, or they could try to get me treatment for something that is not actually happening. In either case, I could die in the meantime. It’s that serious.
And mind you, absolutely nobody present at the meeting is qualified to diagnose any of my health conditions. Not even the nurse. And if there was concern about an undiagnosed health condition, the first step would be to connect with people who are actually treating me, not to mention connect with me and my DPA. Me, my doctors, and my DPA were left out of this process. But I’m supposed to be okay with them writing a document that could put my life in danger because they supposedly mean well.
Mind you, I don’t think they all meant well. The person who wrote the document is someone who flat-out doesn’t like me. That’s one reason that a large portion of the document, despite being supposedly a medical document, exists to describe behavior in me (including what I look like when angry — as if anger is a medical emergency) that he doesn’t like. Some of which is behavior that has never even existed. It was written by him and signed off on by a woman who never met me.
At one point my agency offered to set up a meeting with the stranger who had signed my document. The purpose of the meeting would, as far as I could tell, be for her to explain to me at length why she was justified in signing off on a medical condition that’s never been diagnosed, in a total stranger she’s never met, in a situation that would put me in danger if the document was to be believed. Basically she would explain to me why all of this was okay. I declined the meeting eventually.
And the thing is, I badly need a document that tells them what to look for in an emergency. I have a lot of very predictable medical emergencies. None of those things are in this document. I have been told the document has been replaced, but I haven’t seen the new document so I don’t know what’s in it.
But the alarming thing about all this, and I know my experience here is not unique, is that they can just write basically anything they want in a medical file, and affect my medical treatment. Even though none of them are qualified to diagnose medical conditions. I’m supposed to be okay with it because they meant well. I’m supposed to accept that they chose to focus on something I don’t have because it’s more easily treatable than what I do have. I don’t think that’s actually what went down, but since I’m not at these meetings, I have no way of knowing what really did happen.
This basically works the same way that it works when they can write you up as committing crimes you didn’t commit, and then sentence you to all kinds of things, without any pretense of due process. They can also write you up as having medical conditions you don’t actually have, without ever involving you or your doctors or anyone with a license to diagnose and treat said conditions. They can pretty much do this without ever getting in trouble for it. They’re a law unto themselves, it seems.
And the consequences can be pretty dire. If they want to ignore actual medical conditions and make up diagnoses that don’t fit you, that can range from inconvenient to life-threatening depending on what they’ve decided. There’s a reason they shouldn’t be practicing medicine. And I’ve heard horror stories about things like this all the time.
Usually it runs that something physical is turned into something “behavioral” or “psychiatric” (which is not what they did with me in this instance).
A good example of what is typical, is a man I used to know. He was written up for disruptive behavior and made to see a psychiatrist. The psychiatrist gave him the same diagnoses he gave every other patient of his with a developmental disability. Then he gave him the exact same cocktail of psychiatric medication — designed to control behavior — that he gave to every other patient of his with a developmental disability. This is a psychiatrist who made a living treating people with developmental disabilities by formula: Same diagnoses, same treatments, exactly, no matter who the patient was. This psychiatrist was associated with the agency that provided me and this man services back in the day.
Anyway, turns out that when the man finally sought medical care from an actual doctor who wasn’t associated with the system, they found things. Lots of things. Including that he’d been walking on two dislocated hips for over a decade. He was in massive amounts of untreated pain. But the developmental disability service system was more than happy to label his pain disruptive behavior and send him to a psychiatrist rather than doing the relatively easy medical exam that would’ve shown them the dislocations. This is very common.
So the guy was on a cocktail of strong neuroleptic drugs for dislocated hips. When neuroleptics are used to control behavior, they work by disrupting the connections between thinking and action. (They also can disrupt thinking internally, and the connections between one thought and the next.) They are very invasive, carry some deadly risks as well as the risk of permanent brain damage, and really shouldn’t be used on unconsenting people. So they wanted to put him on so much medication that he stopped acting like he was in pain, but they didn’t care about the pain itself. Even after the source of the pain was discovered.
And they never got in trouble for what happened to him. The agency that misdiagnosed me without a license has never got in trouble for their actions either. As far as I know these people are considered above the law. There may be regulations, but there are no real protections for clients against this kind of mispractice of medicine. Nothing happens to them even when they’re wrong. And even if they were right, they’d have no business diagnosing and treating things they’re not qualified to diagnose or treat.
I’ve noticed that whether it’s acting like they have their own internal criminal justice system, or practicing medicine without a license, outside agencies (including law enforcement and medicine) consider it all to be kind of an internal affair. Like the DD system is allowed to be its own self-contained medical system, its own self-contained criminal justice system, its own self-contained system. And nobody’s really gonna get in the way, because people with developmental disabilities are Somebody Else’s Problem. And as long as we aren’t landing on their doorstep, they’re more than happy to pass off our legal, psychiatric, and medical management to a system not qualified to deal with any of the above.