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9:36pm
September 24, 2014
What I now know about fat women and endometrial cancer
Yes, abdominal hysterectomies have poorer results. But research shows we do very well with vaginal hysterectomies.
But, tres surprise, we’re not often offered them.
We have a poorer response than thin people to radiation (more shielding. The day after the apocalypse, we’ll be the only ones standing ;) ), which, surprise again, is what lots of fat women get offered. But not all. Many fat women are told that they’re too fat for any treatment.
Also surprise: We have a higher mortality rate from endometrial cancer. I’m … shocked.
89 notes
6:21pm
September 23, 2014
They’re telling my friend she can’t get routine cancer surgery…
1. Because she’s fat, and they’re afraid to operate on fat people. (Well, they’d be fine doing much more invasive weight-loss surgery on her, but the less invasive and much more straightforward hysterectomy, they’re scared of. That tells you everything.)
2. They spent a long time eyeing her wheelchair and yammering about quality of life, which is always, when dealing with disability and healthcare and life-saving treatment, a euphemism for “You have no quality of life so saving your life isn’t a priority.”
Once she blogs about it, I’m going to be reblogging the fuck out of it, as often as I can. This is one of my closest friends on earth and she saved my life through tumblr and I’m going to do my damndest to save hers through tumblr.
So once she posts what to do, I’ll be reblogging it several times a day if that’s what it takes, I know how many followers I have, and I know that tumblr saved my life, so it can save hers.
FUCK FATPHOBIC ABLEIST ONCOLOGISTS. JUST FUCK THEM.
7:40pm
August 2, 2014
When you’re in a nursing home
And you keep asking for your pain meds, and hear others asking for their pain meds, and you have to wait for what feels like hours. This can feel like torture. A friend who works at a different nursing home (private pay though) says folks are treated better where she works - time of day may matter, I don’t know? It’s been over an hour though - aha, four call lights later, they are here with my meds (they would just answer, say ok, and not reply earlier. Maybe I wasn’t due yet but they could tell me that instead of just making me wait).
Course the pain makes if feel like hours and it may not actually be that bad but it feels like a pattern. And yeah I am nice to the CNAs and nurses - not rude and don’t complain and do try to always have empathy for them. But it can feel disrespectful and ableist of them. So I wonder if this is a pattern/because they are overworked & ridiculously underpaid. I want to make it clear I do empathize because here in RI CNAs get minimum wage and not much respect.
It’s funny how I jump to make that clear though…
And it’s not just here. It happens at the ER a lot too, inpatient at hospitals. Maybe private pay gets treated differently? I used to be on my dad’s insurance… Anyway.
This is an area in which advocacy work could and should be done.
11:49am
July 21, 2014
Anonymous asked: Hope you have a quick recovery from your stay at the hospital!Oh these hospital stays are from awhile ago. I’m just using them as examples of ableism.
11:37pm
July 20, 2014
Another hospital stay, another experience of ableism.
Another hospitalization, I was vomiting uncontrollably and had collapsed on my bed due to some combination of myasthenia and an adrenal crisis. I knew that I was going to die if I didn’t get monitored more than I was being monitored. Instead of monitoring me more, they evacuated my room, shut the door, and ignored my call button. The sound of my vomiting, they said, upset their nice quiet ward. I shit the bed because I was too weak to get onto a bedpan. They said that I could not be allowed to shit the bed, because if I did so, I might get used to it, and might never use a toilet again. I had already begun hallucinating, but I managed to curl myself into a position where my vomiting was least likely to choke me. Then I collapsed completely and went into a delirious, hallucinatory state where I felt like my body was disintegrating and flying out the window. In lucid moments, I wondered if this was what dying felt like.
My hospitalist was informed of my state, and replied that he was only there to treat my pneumonia and that my other conditions, including not having eaten more than broth for weeks beforehand, including possible myasthenia gravis being aggravated by the vomiting, including all the symptoms of adrenal crisis, were no concern of his. There was an argument about whether I belonged in the ICU, and he said that since he was only treating the pneumonia and nothing else, I didn’t need the ICU. My GP tells me that I am lucky to have survived without the ICU, and that I absolutely belonged in the ICU that and many other times. The fact that I’ve been denied access to the ICU when I’ve needed it has always been pure ableism, and this is the kind of ableism I deal with on a regular basis.
Many times, hospitalists see people with multiple, complex disabilities and decide that they are only going to focus on the disease we are there for. This means we get less adequate care inside the hospital than we get outside the hospital, which seems ironic. This doctor literally did not care that I had not eaten for weeks due to undiagnosed gastroparesis, which was later diagnosed during the hospitalization, after more weeks without eating. He was not concerned about my neuromuscular junction disease that made me weaker every time I vomited, including weaker breathing. He was not concerned with signs of adrenal crisis. He was not concerned about controlling the vomiting that was created by the drugs he was giving me for the pneumonia. He was not concerned that I had fallen into a quiet delirium, the most dangerous type of delirium. All he cared about was that someone come in and change my IV bags once in awhile, that they keep my IV flowing at least semi-properly (ended up with a PICC line), and nothing else. Nothing is so lonely as being delirious and alone in a ward where they are doing their best to ignore your existence. And it was ableism that created this whole scenario, ableism that said “Let’s ignore hir doctors, let’s ignore hir disabilities, let’s ignore hir power of attorney for healthcare, let’s pretend all hir disabilities don’t exist except for the pneumonia. Even if it kills hir.”
11:00pm
July 20, 2014
Near-death by ableism by denial of medical care.
I almost died last year because of ableism. I was in the hospital. They didn’t want to give me a feeding tube because, they said, I would have no quality of life with a feeding tube. They acknowledged that life without a feeding tube would eventually kill me, from starvation or aspiration pneumonia, whichever got me first. I luckily had the power of tumblr and the Internet behind me, calling the hospital and telling them they were being watched. Suddenly I got my tube. But not before being put through hell and back. And without the support of those people online, I could easily have died in there. They knew I needed the tube, because they didn’t deny the tube, they just tried to talk me out of it. If I hadn’t needed it, they could have just denied it. Instead, they did their level best to talk me out of a life-saving procedure. And that is the kind of ableism that I live with every day.
When I went to the hospital that time, they said that because I had a developmental disability, then they would not admit me unless I had 24-hour staffing from the local DD services agency. They had no reason for this request. I had never required more care than non-DD patients. The only reason they did this was prejudice, and once we called Patient Relations, they rapidly withdrew their demands. And that is the kind of ableism that I live with every day.
By the way, I love my tube. I have loved my tube every day since I got it, complications and all. My tube is my friend. My tube is how I get food, medications, and water. My tube is wonderful, most of the time. But even people who only grudgingly like their tubes, or resent their tubes, still generally want to be alive. And ableism keeps a lot of us from ever getting the chance to try the tube. Even though the procedure is completely reversible, even though the procedure does not interfere with normal eating, somehow getting a GJ tube is seen by doctors as a death sentence. I prefer to see it as a ticket to life, for as long as my life will stand up. I love being alive, and the assumption that I wouldn’t love being alive if I had a tube, that’s ableism all over again.
12:52am
July 5, 2014
it’s rly interesting how over 80% of women w disabilities will be sexually assaulted and of those survivors, over 60% were assaulted at the hands of a medical professional (doctor, therapist, nurse etc) yet no one talks about that.
3:55am
June 9, 2014
Who would be interested if I made a blog devoted to sharing stories about shitty doctors? One of my friends informed me that some of our mutual friends have been actively doubting my autism exclusively because the first doctor I talked to didn’t think I had it (because she didn’t know anything about it, including what special interests, stimming, and sensory processing disorders were), because “wouldn’t a doctor know better than Evelyna?”
But yeah, obviously we’ve all had incredibly insulting and frustrating experiences with doctors. Anyone with a disability, mental illness, a body deemed “overweight” (because lol fatness is inherently unacceptable and needs to be called “over” as opposed to some arbitrary standard of thinness), chronic condition, etc. could tell you just how ableist and fatphobic and insulting doctors are. Anyone who is queer or trans can tell you how routinely and dangerously heterosexist and cissexist they are.
I had a doctor (who believes I do have autism spectrum disorder) ask me if I “felt emotions” or “cared about people.” According to her, that means that I can have ASD but not Aspergers.
I’ve had a medical professional almost perform a hugely invasive physical procedure on me because when I said that I was sexually active she deemed it to mean “having penis-in-vagina sex with a person with a penis.”
I’ve had tons of absolute bullshit occur, and so has almost every single person I know.
So would that interest you? Would you follow and submit? Would that be a useful outlet? I think it would be a helpful resource to show to people when they try to treat western doctors as infallible and all-knowing, when in fact they are so routinely ignorant that my mum was once told to give my little sister cheese to increase her iron levels. I think it would be useful, and interesting, and a healthy outlet for our frustrations, but idk. Would anyone like that?
Absolutely interested.
10:34pm
May 31, 2014
“I work in an ICU in New York. The scenario described here is the standard practice at my hospital. In fact, the palliative care doctor not only tries to talk patients into dying; she is just one member of an extensive, unofficial tag-team that includes almost every nurse who cares for the ICU patient. These workers file through the patient’s room around the clock, repeating the same, dire litanies of scary predictions in the effort to coax the patient to give up and request a DNR. If the patient is sedated or unconscious for other reasons, the nurses and doctors focus their coercive behavior on the family. It doesn’t matter if the family or the patient requests a DNR–as long as it gets requested, the patient can be moved out of the ICU and allowed to die in a cheaper room. Meanwhile, whichever nurse finally gets the family or patient to “make a decision” brags about it, and is respected by the other ICU nurses as a hero (note: if a patient makes a decision to stay alive and continue being treated, the nurses do not consider this “a decision.” As long as a patient or family keeps deciding to keep the patient alive, the nurses and doctors keep pressing them to “make a decision.”) Meanwhile, the palliative care doctor is cherished and loved by the ICU staff for her ability to sweet-talk almost any family into ordering withdrawal of treatment so the patient “can go to Heaven.” A few weeks after the palliative care doctor began her practice at my hospital, the CEO mentioned her in a memo to all of the staff, thanking her for helping to shorten the average length of time patients were in the ICU and in the hospital. “Length of Stay” is a central measure of a hospital’s potential to make or lose money. The shorter the average patient’s Length of Stay, the better it is for the budget.”
—Comment on “Bill’s Story“ on Not Dead Yet (via gotta-block-em-all)
Something to keep in mind if you’re thinking about the “right to die.”
In theory, it sounds very high-minded. In practice it will not be a free choice. People will be coerced to “freely” die. And as this sort of thing is hard to catch, this sort of coercion will be legal.
(via neurodiversitysci)
I’ve heard of this from other ICU nurses across the country. It’s absolutely real. And to some extent this is what I faced when people were busy trying to convince me not to get a feeding tube – they knew I needed one, knew I’d die without one, but just wanted me out of their hospital even if that meant dying.
3:20pm
May 29, 2014
well thanks WebMD
I feel a lot better now
It’s not like we don’t already worry a lot about being really freaking awful life partners or anything…
WebMD is about as useful as shit in a coffee can.
It claimed that all forms of Polycystic Ovarian Syndrome (some of which are genetic, NOT weight related but cause weight gain) are ‘treated with exercise and diet control’.
If the shit’s genetic, exercise and a lower weight may help, but it’s by no means curing it.
Yeah. From what I understand, increased exercise and dietary change doesn’t even help a lot of people with PCOS that much. (Don’t have it myself, but know a number of people who do.)
Very similar goes for other inherited things that cause metabolic changes including insulin resistance which often makes people pack on weight. Treating symptoms as causes just really doesn’t help. :/
Oh if that’s what they’re saying causes PCOS that might explain a scornful comment I got from a GI specialist this past year:
“Are you sure you have real adrenal insufficiency and not just polycystic ovarian syndrome?”
I explained the tests I’d undergone that proved I had real, severe adrenal insufficiency, and he said “You’re getting away from the point, here. I just wanted to make sure you’re being seen by an endocrinologist.”
At another point, I explained that my GI problems had caused me to lose 70 pounds rapidly and dangerously and without trying, and he looked at me and said “Is this your ideal weight?”
I was about ready to smack him. I have never had another doctor not see losing 70 pounds as serious, but he was just worried about whether I was thin enough yet.
10:37am
May 26, 2014
Pain pain pain.
And everything is coming back normal or negative.
“Maybe it’s something that’s bit showing up”
“Maybe it’s something psychological”
“Maybe your mind is producing pain for you”There are lots of kinds of pain that do not show up on tests.
Most medical problems do not show up on tests, in fact. The things we can diagnose with tests are fewer than the things we can’t.
Assuming that because something doesn’t show up on a test, then it must be psychological, is ridiculous and bad medicine. Especially since I think they’ve actually studied it, and when they really did lots of testing of people diagnosed as having psychosomatic conditions, they almost always uncovered a physical cause if they did enough tests for long enough. Meaning “This is psychological” is usually a doctor’s lazy way of saying “We don’t know” — actual psychological things manifesting as physical things are vanishingly rare in comparison.
And the idea of pain that’s psychological is almost 100% bullshit. Pain is physical. It can come from various parts of the body, it can come from nerves, it can come from the brain (central pain), but all those things are physical. And lots of painful things don’t show up on tests.
And even when something does show up on a test, you have to do the right test. I had severe untreated adrenal insufficiency for years. At minimum, six years. And they did lots and lots of tests, but it took them six years to do the right test to find it. So just because something isn’t on a test now doesn’t mean it won’t be sometime down the road.
But mostly “We don’t know the cause so it’s psychological” is ableist BS, not the actual practice of responsible medicine. (And yes, I know that psychological things are just as real as physical things. But that doesn’t change the fact that something like 99% of things diagnosed as psychosomatic, aren’t psychosomatic at all.)
Yup! Look at fibromyalgia for an example of a real problem that doctors for a LONG time called “psychological” and the symptoms “psychosomatic”.
Doctors even though of multiple sclerosis as psychosomatic/hysterical before they finally found the cause. They have a track record of doing that, especially for diseases more commonly found in women.
Fibro kind of terrifies me because I was diagnosed with that for a few months and at that point doctors stopped looking for other causes and stopped trying to treat me with anything other than “fibro specific drugs” (read: psyche and seizure ones).
I actually have mitochondial disease. Which can be fatal. That is scary. If I had just listened to that doctor I may have died.
I’ve seen articles saying some fibro patients come back with abnormal results from CPET tests similar to mito patients and I wonder how many other people are having that happen to them too. And a lot of the fibro treatments made me worse.
For some horrifying reason, in my experience doctors don’t care about the “why” anymore. They just treat the individual parts. For some reason this is satisfying enough as improvement for them. It’s not for me.
I feel less scared knowing I could die from this because there is a “why”. Even if there isn’t much for treatment now I know the ones I am on is actually actively slowing damage not just hiding it and that gives me more hope for having a future.
In my case, I was misdiagnosed with chronic fatigue syndrome for a very long time. And it turned out I had severe secondary adrenal insufficiency, meaning my pituitary wasn’t making ACTH so my adrenal glands weren’t making cortisol. By the time anyone thought to test my ACTH and cortisol levels, they were too low to be measured at all. And by that point I had almost died many times over, and was in danger of dying still. Luckily, I’m doing a lot better since going on a steroid to replace the cortisol I’m not making.
So I, too, am extremely wary of some of the ‘trashcan diagnoses’ that are out there – the ones that are basically diagnoses that say “We don’t really know what’s wrong, so let’s give you the most vague diagnosis possible instead of continuing looking.”
My neurologist still wants to test me for mito disease for other reasons, but I’m hoping I don’t have that.
But honestly getting a real answer, any answer, even a potentially fatal answer, was so much better than getting no answer. There was awhile where they thought the problem might be a tumor, and even that felt like “You know what, even if it’s a tumor at least I’ll know.” Luckily it was not a tumor. But at this point, I feel like knowing what’s wrong is more important to me than whether I live or die in the end. I’m really happy, though, that currently it’s looking like I have much better chances of living a normal lifespan than I had a few months ago.
But back when I was being diagnosed with CFS, I saw a guy who was supposed to rule out gross neurological dysfunction. And instead of just doing his job and running a neuro exam, he asked a lot of questions and then wrote up a report saying that my parents and psychiatrist were clearly hiding from me the fact that I had no physical problems, and that my problems were all psychiatric in nature, and that only if I got intensive psychiatric treatment would I ever get over this mistaken idea that I had lots of physical diseases.
Then, year after year, I ended up getting test results that validated the fact that I had lots of physical diseases. I have a much better track record that way than most people with legit physical diseases. And yet people still act sometimes as if it could be psychological. The first time I went to the ER in near-adrenal crisis (I had gone completely limp and couldn’t even open my eyes, didn’t respond to pain, etc.) the EMTs had already decided it was psychological before I’d even gotten to the hospital.
But if that one guy had done his job, then maybe we’d have figured this out a lot sooner. And with the sort of shit he wrote in my medical record, it meant other doctors stopped taking me seriously. Including repeated urinary tract infections due to a spastic urethra – stopped taking me seriously because I’d described it as “forgetting how to urinate” and he’d said “you can’t forget how to urinate, urination isn’t voluntary”. (If it’s not voluntary then why aren’t people pissing at random wherever they’re standing at the time?)
So… yeah that kind of attitude pisses me off. And even the jump to go to the most vague diagnosis first, makes me quite nervous. Because CFS is about as vague as you can get. (I know it has specific symptoms, but those symptoms can exist in a number of different diseases.) And in my case the CFS diagnosis delayed the accurate diagnosis of adrenal insufficiency until it was so severe that I could have died.
9:55am
May 26, 2014
Pain pain pain.
And everything is coming back normal or negative.
“Maybe it’s something that’s bit showing up”
“Maybe it’s something psychological”
“Maybe your mind is producing pain for you”There are lots of kinds of pain that do not show up on tests.
Most medical problems do not show up on tests, in fact. The things we can diagnose with tests are fewer than the things we can’t.
Assuming that because something doesn’t show up on a test, then it must be psychological, is ridiculous and bad medicine. Especially since I think they’ve actually studied it, and when they really did lots of testing of people diagnosed as having psychosomatic conditions, they almost always uncovered a physical cause if they did enough tests for long enough. Meaning “This is psychological” is usually a doctor’s lazy way of saying “We don’t know” — actual psychological things manifesting as physical things are vanishingly rare in comparison.
And the idea of pain that’s psychological is almost 100% bullshit. Pain is physical. It can come from various parts of the body, it can come from nerves, it can come from the brain (central pain), but all those things are physical. And lots of painful things don’t show up on tests.
And even when something does show up on a test, you have to do the right test. I had severe untreated adrenal insufficiency for years. At minimum, six years. And they did lots and lots of tests, but it took them six years to do the right test to find it. So just because something isn’t on a test now doesn’t mean it won’t be sometime down the road.
But mostly “We don’t know the cause so it’s psychological” is ableist BS, not the actual practice of responsible medicine. (And yes, I know that psychological things are just as real as physical things. But that doesn’t change the fact that something like 99% of things diagnosed as psychosomatic, aren’t psychosomatic at all.)
Yup! Look at fibromyalgia for an example of a real problem that doctors for a LONG time called “psychological” and the symptoms “psychosomatic”.
Doctors even though of multiple sclerosis as psychosomatic/hysterical before they finally found the cause. They have a track record of doing that, especially for diseases more commonly found in women.
4:12am
May 26, 2014
Pain pain pain.
And everything is coming back normal or negative.
“Maybe it’s something that’s bit showing up”
“Maybe it’s something psychological”
“Maybe your mind is producing pain for you”
There are lots of kinds of pain that do not show up on tests.
Most medical problems do not show up on tests, in fact. The things we can diagnose with tests are fewer than the things we can’t.
Assuming that because something doesn’t show up on a test, then it must be psychological, is ridiculous and bad medicine. Especially since I think they’ve actually studied it, and when they really did lots of testing of people diagnosed as having psychosomatic conditions, they almost always uncovered a physical cause if they did enough tests for long enough. Meaning “This is psychological” is usually a doctor’s lazy way of saying “We don’t know” – actual psychological things manifesting as physical things are vanishingly rare in comparison.
And the idea of pain that’s psychological is almost 100% bullshit. Pain is physical. It can come from various parts of the body, it can come from nerves, it can come from the brain (central pain), but all those things are physical. And lots of painful things don’t show up on tests.
And even when something does show up on a test, you have to do the right test. I had severe untreated adrenal insufficiency for years. At minimum, six years. And they did lots and lots of tests, but it took them six years to do the right test to find it. So just because something isn’t on a test now doesn’t mean it won’t be sometime down the road.
But mostly “We don’t know the cause so it’s psychological” is ableist BS, not the actual practice of responsible medicine. (And yes, I know that psychological things are just as real as physical things. But that doesn’t change the fact that something like 99% of things diagnosed as psychosomatic, aren’t psychosomatic at all.)
3:22pm
May 14, 2014
Educating Doctors About Interacting With Fat Patients
Educating Doctors About Interacting With Fat Patients
As the mainstream media constantly harp on the ‘obesity epidemic’ and warn us all of the growing numbers of fatties sweeping the nation, one thing people seem reluctant to do is to adjust medical education when it comes to teaching trainee doctors how to interact with fat patients. As this is a world where fat is considered ‘bad’ both socially and medically speaking (despite evidence to the…
4:16am
May 12, 2014
It’s come to my attention…
…that even disability rights groups that oppose euthanasia, don’t want to hear about euthanasia and murder and other abuses happening within the hospice system. Why? Because within their ideology, a perfect, idealized hospice system is necessary in order to be able to say, “Here, here’s a way people can die peacefully at home, you don't need euthanasia for that.”
So because that piece of their ideology is necessary. They are entirely unwilling to look at the ways that killing, and encouraging people who don’t want to die to be “accepting” of their deaths, have become normalized in large parts of the hospice system. This is inconvenient to their ideology so they act like it’s not happening at all.
Which means that disability rights groups basically aren’t stepping up to help anyone who’s willing to blow the whistle on these practices. Which is horrible. What the hell happened, that made disability rights group accept what is both an institution, and a place where death is pushed on people against their will? If it were called anything other than hospice, there’d be an outcry. But hospice is sacred, so if things are going wrong there, if things are built into the damn system that ensure that they’ll go wrong, then those things all have to be swept under the carpet. By the same people who claim to be protecting us against those abuses in other contexts.
Meanwhile disabled people who are witnessing horrible abuses up to and including murder, in that system, have nowhere to turn. Not even our own communities. "Oh, you’re talking about hospice? But hospice is wonderful.“ (headdesk)