Tuesday, November 30, 2021

Comments by TooStubbornToDie

Showing 7 of 7 comments.

  • “It should have been safe and healing for me in the hospital.” “The biggest challenge for me about this experience is that none of it had to happen. The nurse near the window could have asked me why I did not want to move.”

    I am sorry that this was your experience. Mine has been the same. And most of my experiences never had to happen.

    One thing about being in a hospital whether that be in the psych ward of a hospital or outside the psych ward is it is never a safe or a healing environment, I have learned. If you point out in society that the nurses were mean to me in the psych ward everyone thinks no that is not possible. Nurses are not capable of not being kind. Over the years I have had 6 psych experiences and 3 non psych experiences. Most nurses though do not care about the patients. I have had a few good nurses but overall my experience is overwhelmingly negative. I am the good patient. I am the quiet patient. I used to do as I was told, then my condition would get worse. I suffered being the good, compliant patient. Then one day, I learned that I must learn to lie. Yes. Healthcare has taught me no good thing comes from honesty with them. I am a sensitive individual. I am not comfortable with the lying. I learned I must hide most of my physical pain and suffering. It only gets me sent to Dr. Freud. I hide most of my physical symptoms. Luckily for me, people in medicine have poor observation skills. They can be pressing on my abdomen and I am totally wincing in pain and as long as you don’t vocalize they don’t notice and even if you do they don’t notice. I seriously lost 50 lbs from the time I saw a gastroenterologist in January until they saw me in September. But they didn’t even notice that I had lost weight. I even mentioned that I was concerned that I was losing weight but still nope “Patient is not losing weight.” Now I live on IV nutrition and I am told I get such “GREAT CARE.” I think they may be trying to brain wash me. Truth be told they sign the order but never talk to me. My doctor knows nothing about me. I had this evil person call today. Now when I say evil I mean I have no idea why she called me. I expected a call for an appointment. She tried to push off her concerns as my concerns and keep telling me she didn’t want to waste my time, ironically all the while wasting my time. If you don’t want me as a patient either just say so or better yet don’t ever call me. Not calling me would have been far kinder than some person lying to herself telling herself that she is calling me because she cares. She said they may take over my nutrition if I move 2000 miles and am closer. So I am supposed to blindly move not knowing if I will starve to death or not. That is the definition of insanity. Anyway this person didn’t think her request was in anyway insane. Like most people in healthcare they live in some delusional fantasy world. Plus I kind of want to meet me doctor before I say yes. If I am going to have to work with this person, I would like to meet them before I make some crazy commitment. And yet they think I am the one with mental health problems. I think everyone that works in healthcare has mental health problems. They have delusional expectations of patients. We are supposed to think of them as HEROES. They ripped my feeding tube out without deflating the balloon but yet I am supposed to call that doctor my hero while I was screaming involuntarily in pain. They refuse to help me when I ask. They are not my hero. A thorn in my flesh maybe but hero nope. I had depression problems because all my physical problems were not believed. It is normal for females to not be believed. It is also very normal for patient with dysautonomia to see 50 doctors before one figures out they have a form of dysautonomia and they are not “mentally ill.” Most dysautonomia patients are given a mental health label before they ever get an accurate diagnosis. It is so much easier to say oh you have anxiety or you have depression then to figure out what is wrong. It took me having one foot in the grave before I got a diagnosis. But with a diagnosis did not come a cure. Nor did it come with treatment. Everyone of my problems is someone else’s problem. My gastroenterologist think my neurologist should treat my GI symptoms. My neurologist points back at my gastroenterologist. Same with ophthalmologist or any other speciality. Go get help from someone else. Just not me.

  • Thank you for your insight. I believe the concept of weaponized empathy holds true not only for emotional distress but for physical as well. It seems that patients with physical conditions suffer too loudly. If you are in pain, here is an antidepressant. It doesn’t seems to matter what your physical symptoms are, they try to give you an antidepressant. People in healthcare need to ask what is a normal response to a stimuli. If the person has gastroenteritis you wouldn’t expect them to be bubbly and cheerful, would you? If they have a hole in the cornea of their eye, wouldn’t the obvious answer be they are in pain? Instead they are given an antidepressant because they are suffering wrong with their eye pain. Our society seems to imply people should never feel negative emotions and that message is harmful. It also sends the message that we should be silent when in physical pain as well.

  • Thank you for your story Daniel. For you mouth ulcers, you might want to check your toothpaste. I used to get horrible mouth ulcers too. Most toothpastes contain an ingredient called Sodium Lauryl Sulfate. That ingredient has been know to cause mouth ulcers and now that I avoid toothpaste containing it, I rarely get them.

    I am a psychiatric survivor. I was given quite a cocktail of psychiatric drugs. I was started on an SSRI when I was 20, for off-label use. I had TMJ issues. Shortly after started the SSRIs I developed terrible GI issues. I had diarrhea and during the small bowel follow through the barium was in my stomach for 4 hours. I should have been diagnosed with gastroparesis (delayed gastric emptying) then but nothing was wrong with me. The antidepressants were depressing and lead to a psychiatric misdiagnosis. I was given more and more drugs. By the end of my 14 years on psychiatric meds, I was on the maximum dose of zyprexa, the maximum dose of Lamictal, and Zoloft. I was walking into walls. Sleeping 12 hours straight through 3 alarm clocks. I was regurgitating food. I had severe tremors. And there are no such thing as side effects only direct effects of the drugs that doctors and pharmaceutical companies like to ignore. I am completely off all psychiatric drugs. I educated myself on how to taper myself off and I received very little help. I was told something bad might happen. At the point I decided to go off my drugs my body was already shutting down. My weight was in an all out free fall. According to my doctors I wasn’t losing weight. How they missed the 100 lbs weight lost is beyond me. Were they blind?

    Today, I get most of my nutrition through an IV. My GI tract is nonfunctional. I have dysautonomia which is a fancy term for the dysfunction of the autonomic nervous system. All those things you don’t think about but your body is supposed to do automatically. One gastroenterologist admitted that it was probably the psychiatric drugs that caused my medical issues. Gastroparesis used to be limited to just people with diabetes, but not any more. The vast majority of people with gastroparesis and GI dysmotility are idiopathic, a fancy medical word for they don’t know. Being in the gastroparesis support groups I have noticed a high correlation of the people with gastroparesis and dysautonomia are currently taking or haven taken psychiatric medications.

    I now live with a plethora of symptoms. Regular healthcare is just as bad as mental health care. Consent…What exactly is that? I was given a “Nutrition Support Partnership Agreement” and partnership is a real stretch of the imagination. To sum up the contract it says that if you don’t do everything your doctors ask we will kill you. Actually they phrase it a little nicer. If you don’t follow every recommendation we make then we will throw you out of the program. For those of us that need nutrition support being throw out of the program means dehydration, malnutrition and potential death if you can not find another doctor to take over in time and very few doctors are willing to prescribe nutrition support.

    Doctors and nurses regularly lie in my medical chart. If they don’t like you, they have no problem causing defamation of character. I dislike all the doctor and nurse worship that goes on in this country. The truth is I am regular abused and then blamed for that abuse. That abuse is not limited in psychiatric wards. It is systemic throughout the hospital systems. I have nightmares about people that work in healthcare. The “Care” in the word Healthcare is a real stretch of the imagination. They have no empathy and no compassion for the people they are treating and “treating” is also a stretch of the imagination. They try to give you another cocktail of drugs to cover up some of the symptoms. Most doctors tell me it is not there job to diagnose or treat. Most of my appointments look exactly the same. Yes, still have the same symptoms and see you in 3 months, with some verbal abuse thrown my way. Maybe insulting me is the only way they know how to interact with another human. I don’t have a primary care doctor. They are the worst with the insults. Also they don’t accept patients like me, they like healthy patients. A gastroenterologist was trying to do a study with primary care physicians to see if they could get to the patients diagnoses faster but her studied failed because as soon as the PCP found out their patients had dysautonomia and gastroparesis they abandoned their patients. PCPs are the worst for patient abandonment. They claim they don’t feel qualified to treat us. The truth no one is qualified. I am on my own. I am left to fly solo and navigate a scary world completely and utterly alone. Most patients give up. Only the strong fight. It is an unrelenting battle. A battle to get them to do their jobs just to stay alive another day. I would have lost that battle a long time ago if I had stayed on the psychiatric medication. I have been on Parenteral Nutrition/IV Nutrition for 4 years now with almost no hope of ever getting off.

    My recommendations are stay away from psychiatric drugs.

  • Thank you for your Blog. It makes absolutely no sense unless you have spend way too much time with healthcare workers and then by their roundabout logic it seems to make complete sense in the fact that they never make sense and have a constant double standard.

    What I have learned from having multiple “rare” medical conditions and nearly dying multiple times is the following about all specialities in medicine.

    When you visit people in healthcare look happy but not too happy because if you are too happy you are manic. Don’t look sick because that is a clear sign of depression. But do look sick because otherwise you are faking. But don’t. In other words, no matter how you look you are screwed and no matter what, you have a mental illness rather than a legitimate physical illness.

  • Good point. The medical profession is killing people. Not only are the killing people, they are causing PTSD in many people. Almost everyone I know on nutrition support whether on tube feeding or TPN has PTSD induced by receiving healthcare. Not to mention most of us are terrified on medical kidnapping. This happens when family members are separated from the patient. The medical profession will claim that the family member is causing the illness. The patient is then determined to have a mental health condition for example anorexia nervosa when the patient actually has a GI motility disorder, commonly Gastroparesis. The patient is then force fed oftentimes through the g portion of their GJ tube even though tests demonstrate delayed gastric emptying. The patient will experience pain and vomiting. Even beg the nurse to stop. The nurse will refuse and the patient will continue to be force fed and oftentimes this leads to death of the patient. Patient abuse needs to stop. Interesting though I think those abusing the patients do not perceive their behavior as inappropriate. Don’t even getting me started on “mental illness.” I am regularly told I must suffer from depression because I have a chronic illness. And once depression is in your medical chart there is no getting it out. Once depressed always depressed. Not to mention a mental health diagnosis justifies abuse of the patient. When my mom worked at a hospital testing newborns for hearing she overheard the nurses on the maternity floor state you can mistreat that patient she has a “mental illness” and she won’t know any better. You can not ask the very people that are abusing the patients to treat abuse.

  • I loved this article on anger. It reminded me of when I went to an emergency department and I saw a sign that they would not tolerate Anger. Anger was a crime and I could be charged with a felony conviction because the staff had the right to feel safe. I am not sure when anger became a crime in this country.

  • I like the concept of changing psychiatric care. However, based on my experience as a patient on long-term parenteral nutrition (Nutrition delivered through an IV directly to the bloodstream) I would say that change is only a remote possibility. You are talking about changing healthcare as a whole. If you ask me what frightens me most in the United States it is going to a hospital or doctor’s office. Nutrition Support patients spoke about medical kidnapping behind the scenes at our last Oley conference (a conference geared towards those on nutrition support.) Patients shared their fears of “mental illness” diagnosis. Most of the patients are terrified to see a psychologist because it can be used against us to take control over our lives. I have known patients that have been force fed through a feeding tube begging the nurse to stop. They refuse to end the torture and they ultimately kill the patient. As someone on nutrition support I am abused by the healthcare profession weekly. It is something I am not allowed to speak about because patient abuse is where rape used to be. It must be the patients fault. People the work in healthcare can do no wrong. Unfortunately psychiatry like the other healthcare professions are not about getting people better. People with physical health conditions are misdiagnosed with mental health conditions instead of doctors looking for answers. I fear something drastic must happen to cause change in care. It would require holding doctors and nurses accountable for their behavior and that isn’t going to happen anytime soon.