Other Severe lack of trust in medicine and healthcare "professionals"

whiteraven

MyPTSD Pro
I'm really struggling right now with something that has been an issue for a very long time.

As background, I have a degree in nursing (worked psych for several years, then got out of the profession). My father was a physician's assistant. My brother has worked for 25 years in physical therapy in a hospital.

I have had multiple, decades-long issues with healthcare. I've been misdiagnosed, not diagnosed at all, refused care I needed, been given the wrong medicine (as in, x was ordered and I got y instead or the wrong med was refilled and the dosage completely changed in error), have been tested unnecessarily, NOT told I had stage 3 kidney disease - shown in labwork - and then told by another doctor the lab results meant nothing, been medicated nearly 40 years for epilepsy, only to be told by the last neuro I saw that he thought it was all in my imagination, suffered long-lasting effects from meds (and was never told about those side effects to begin with), and so much more.

A year or so ago, I came to the conclusion that most are in it for the money and don't care at all about a patient's health. I also came to understand that most only follow their (inadequate) training and are incapable of stepping outside the box to help with the things that aren't completely covered in their books.

My last doctor said I likely had fibro and that I should "just push through" the pain. I've had low back pain for years and was told I had a lot of spinal issues - until my last MRI was read by a radiologist from my last job and he said my back looked really good for someone my age. My massage therapist seems to think that most of my pain is coming from tissues and fascia. I can't tolerate even light massage.

So...I have diabetes. When I was taking my readings regularly, they were ok until mid-last year when it was pretty high. I last went to the doctor in September, and told them about the blood sugar and, when I couldn't afford bloodwork, they shrugged (literally) and told me to come back when I had insurance. I still don't have insurance and the doctor has since moved out of state, so I also don't have a doctor anymore.

Honestly? It's been pretty stress-free in terms of my health. I don't check my sugars and I don't see a doctor. I did have my eyes checked a few months ago, and there was no sign there were any problems.

I did get new glasses and my vision is super-blurry close-up unless I hold the glasses up and look through the bottom (they are progressives). I went back to the eye doctor (a different one, though) a week ago and they adjusted them. Still having the issue. I saw her again today and she rechecked my eyes, saying the prescription was wrong.

She is going to have them fixed, but asked me to take my blood sugar because it can affect the results. I did. It was high. And here I am.

Anything medical/healthcare-related seriously triggers me. I get extremely anxious, very depressed, want to die.

A related issue is that I have huge issues with emotional eating. I don't know how to get past any of this so that I can be healthier. I know the glucose levels can be managed (because I've done it before, albeit briefly), but it never lasts because I am so depressed all the time.
 

TruthSeeker

MyPTSD Pro
I'm really struggling right now with something that has been an issue for a very long time.

As background, I have a degree in nursing (worked psych for several years, then got out of the profession). My father was a physician's assistant. My brother has worked for 25 years in physical therapy in a hospital.

I have had multiple, decades-long issues with healthcare. I've been misdiagnosed, not diagnosed at all, refused care I needed, been given the wrong medicine (as in, x was ordered and I got y instead or the wrong med was refilled and the dosage completely changed in error), have been tested unnecessarily, NOT told I had stage 3 kidney disease - shown in labwork - and then told by another doctor the lab results meant nothing, been medicated nearly 40 years for epilepsy, only to be told by the last neuro I saw that he thought it was all in my imagination, suffered long-lasting effects from meds (and was never told about those side effects to begin with), and so much more.

A year or so ago, I came to the conclusion that most are in it for the money and don't care at all about a patient's health. I also came to understand that most only follow their (inadequate) training and are incapable of stepping outside the box to help with the things that aren't completely covered in their books.

My last doctor said I likely had fibro and that I should "just push through" the pain. I've had low back pain for years and was told I had a lot of spinal issues - until my last MRI was read by a radiologist from my last job and he said my back looked really good for someone my age. My massage therapist seems to think that most of my pain is coming from tissues and fascia. I can't tolerate even light massage.

So...I have diabetes. When I was taking my readings regularly, they were ok until mid-last year when it was pretty high. I last went to the doctor in September, and told them about the blood sugar and, when I couldn't afford bloodwork, they shrugged (literally) and told me to come back when I had insurance. I still don't have insurance and the doctor has since moved out of state, so I also don't have a doctor anymore.

Honestly? It's been pretty stress-free in terms of my health. I don't check my sugars and I don't see a doctor. I did have my eyes checked a few months ago, and there was no sign there were any problems.

I did get new glasses and my vision is super-blurry close-up unless I hold the glasses up and look through the bottom (they are progressives). I went back to the eye doctor (a different one, though) a week ago and they adjusted them. Still having the issue. I saw her again today and she rechecked my eyes, saying the prescription was wrong.

She is going to have them fixed, but asked me to take my blood sugar because it can affect the results. I did. It was high. And here I am.

Anything medical/healthcare-related seriously triggers me. I get extremely anxious, very depressed, want to die.

A related issue is that I have huge issues with emotional eating. I don't know how to get past any of this so that I can be healthier. I know the glucose levels can be managed (because I've done it before, albeit briefly), but it never lasts because I am so depressed all the time.
Glasses-progressives don't work for everyone. Some people get a couple prs of glasses (one for the car, driving), one for computer, one for reading up close...or bifocals for reading and computer work. Check your options. I can't wear progressives and it is worse if I'm dissoicated....I become a fall risk.

The Keto diet can help regulate blood sugar (high protein, low carb). My blood sugar was up and down, and cutting out all soda, high carbs, added sugar,0 cal. sweetners, and increased protein/reduced carbs helped a lot. I drink premiere protein, 30 grams of protein first thing in the morning. Eat veg. soup or a salad and some kind of meat once a day, and one high protein/lower carb meal during the day.

I make measured/portioned meals and keep them on hand in the freezer. I use a crock pot or Insta-pot and cook like 12-15 meals and freeze (something healthy that tastes good) and freeze them all at once in aluminum throw away containers-or glass containers w plastic lids).

While you might be thinking......(I don't really know if you are).....make meals???.....one more thing???? I'm depressed. Got no energy for that...... but I will say, it is a relief having something nutritious in the freezer when I'm down, because I know I'm at least eating right. Consider the idea....

Wonky blood sugar can negatively impact mood, cause fatigue, sleep issues, and cause brain fog and confusion among other more unhealthy side effects. Unhealthy eating can also screw up your mood. Moreover, since you are diabetic....you checking your glucose daily and recording it a health app on your phone can be helpful, especially in my case, where things get a bit foggy and forgetful when my sugar is off (I have one).

Your local health clinic might be a good resource for a diabetic check up......???

I'd consider figuring out a core plan (like health and sleep first).....and writing down a plan of attack.....what are all the things you can do, what things or resources do you need to find out about, and choose only one goal....what's the most important thing you need to do in your opinion?
 

whiteraven

MyPTSD Pro
I appreciate the response, @TruthSeeker.

Glasses-progressives don't work for everyone.
I've been wearing them forever, though.
I make measured/portioned meals and keep them on hand in the freezer. I use a crock pot or Insta-pot and cook like 12-15 meals and freeze (something healthy that tastes good) and freeze them all at once in aluminum throw away containers-or glass containers w plastic lids).
The most I can do at one time is one pot, 3-4 meals, same thing. I just can't do more than that. I absolutely HATE to cook, and I haven't found any recipes I really like. So I end up making stuff I don't and not eating it.
While you might be thinking......(I don't really know if you are).....make meals???.....one more thing???? I'm depressed. Got no energy for that...... but I will say, it is a relief having something nutritious in the freezer when I'm down, because I know I'm at least eating right. Consider the idea....
I get what you're saying. But you have to get from point A to point B in order to have something to be relieved about.

It's like, I hear - all the damn time - "can you afford not to do xyz," and it makes me crazy. Because you have to have the money before you can do anything. It's the same thing with depression. If I don't have the energy or care to begin with...
Wonky blood sugar can negatively impact mood, cause fatigue, sleep issues, and cause brain fog and confusion
The only difference I noticed is that when my BS was high, I felt really good. Like better than I have in years (the dx is a fairly recent one). Now it's back down closer to normal and I feel like shit again. But it's always been normal - until recently - and I've always felt like crap. I sleep great, no fatigue at all.
Your local health clinic might be a good resource for a diabetic check up......???
I've checked around and I can't afford anything here. *shrug*
 

TruthSeeker

MyPTSD Pro
I appreciate the response, @TruthSeeker.


I've been wearing them forever, though.

The most I can do at one time is one pot, 3-4 meals, same thing. I just can't do more than that. I absolutely HATE to cook, and I haven't found any recipes I really like. So I end up making stuff I don't and not eating it.

I get what you're saying. But you have to get from point A to point B in order to have something to be relieved about.

It's like, I hear - all the damn time - "can you afford not to do xyz," and it makes me crazy. Because you have to have the money before you can do anything. It's the same thing with depression. If I don't have the energy or care to begin with...

The only difference I noticed is that when my BS was high, I felt really good. Like better than I have in years (the dx is a fairly recent one). Now it's back down closer to normal and I feel like shit again. But it's always been normal - until recently - and I've always felt like crap. I sleep great, no fatigue at all.
Your writing seems kinda "black and white" thinking .....and maybe that's the way I feel too, when I'm stuck. I guess what I mean is that you see yourself as limited ("the most I can do-we usually can do more if we try", "I hate too cook and basically you don't like any recipes you've tried (must be hard to eat anything if you don't like anything)- and I know from experience, changing dietary habits can be difficult. I'm sorry you don't have funds for a doc now, and sorry you are depressed. But you can check your glucose daily and adjust what you eat to compensate if it is high, you can find a way to eat more healthily, and still cheaply. It's hard to plan it though......and that's the stuck place.....It's just my opinion, that you're leaning in the direction of black and white thinking and so you don't see any viable solutions. That''s a hard place to be.

I hope you find the energy to get unstuck.....stop focusing on what you can't do and focus on what you can change, and just make a plan and do it. I know it can be frustrating feeling stuck....without motivation.....and when I'm in that place, I make lots of excuses .....and eventually, I get dissatisfied enough to get off my butt and make a change. Change is hard, it's work, and when I'm depressed.....things seem so difficult.....like I can't......but you seem strong in character....and you have the skills to motivate yourself and make the changes that you can.....just keep looking......something will click and start moving you forward, again....good luck with this.
 

internal

Sponsor
the only doctor that i have ever liked and i am being very literal here, is my current specialist. it is possible i might like my current therapist but i cannot really tell because i have met her 2 times. (and i have less experience with therapy as i only ever had a therapist once when i was a child.)

i have many poor experiences with MDs over a very long period of time that makes me believe that the problem is institutional (the condition of medicine) and not personal (this doctor sucks).

i have had doctors say things to me that make me wonder what f*cking year i am living in. i have had completely unprofessional conduct occur. i have had doctors forget what medication i am on. or say things that are completely medically incorrect. or fail to realize that very obvious symptoms i am having are connected to what i am supposed to be even there to see them for (like rapid weight loss "just eat healthier"). and on and on and on.

and the difference is that she is passionate about what she does and she has a personal connection to what she does. she isn't just pushing the clock and she attained a high level of education to do what she is doing.

and the difference to that is that the person i'm seeing now isn't a traditional medical doctor. so i think they exist outside those toxic medical structure altough i do not know how accurate that perception is as i am not very familiar with what exactly that even means. or what the difference is necessarily between doctors, researchers, and researchers involved in patient care.

as with any activity there are a lot of mediocre people, some truly terrible people, some incompetent people and a couple of very excellent people.
 

Starfire

Confident
I'm really struggling right now with something that has been an issue for a very long time.

As background, I have a degree in nursing (worked psych for several years, then got out of the profession). My father was a physician's assistant. My brother has worked for 25 years in physical therapy in a hospital.

I have had multiple, decades-long issues with healthcare. I've been misdiagnosed, not diagnosed at all, refused care I needed, been given the wrong medicine (as in, x was ordered and I got y instead or the wrong med was refilled and the dosage completely changed in error), have been tested unnecessarily, NOT told I had stage 3 kidney disease - shown in labwork - and then told by another doctor the lab results meant nothing, been medicated nearly 40 years for epilepsy, only to be told by the last neuro I saw that he thought it was all in my imagination, suffered long-lasting effects from meds (and was never told about those side effects to begin with), and so much more.

A year or so ago, I came to the conclusion that most are in it for the money and don't care at all about a patient's health. I also came to understand that most only follow their (inadequate) training and are incapable of stepping outside the box to help with the things that aren't completely covered in their books.

My last doctor said I likely had fibro and that I should "just push through" the pain. I've had low back pain for years and was told I had a lot of spinal issues - until my last MRI was read by a radiologist from my last job and he said my back looked really good for someone my age. My massage therapist seems to think that most of my pain is coming from tissues and fascia. I can't tolerate even light massage.

So...I have diabetes. When I was taking my readings regularly, they were ok until mid-last year when it was pretty high. I last went to the doctor in September, and told them about the blood sugar and, when I couldn't afford bloodwork, they shrugged (literally) and told me to come back when I had insurance. I still don't have insurance and the doctor has since moved out of state, so I also don't have a doctor anymore.

Honestly? It's been pretty stress-free in terms of my health. I don't check my sugars and I don't see a doctor. I did have my eyes checked a few months ago, and there was no sign there were any problems.

I did get new glasses and my vision is super-blurry close-up unless I hold the glasses up and look through the bottom (they are progressives). I went back to the eye doctor (a different one, though) a week ago and they adjusted them. Still having the issue. I saw her again today and she rechecked my eyes, saying the prescription was wrong.

She is going to have them fixed, but asked me to take my blood sugar because it can affect the results. I did. It was high. And here I am.

Anything medical/healthcare-related seriously triggers me. I get extremely anxious, very depressed, want to die.

A related issue is that I have huge issues with emotional eating. I don't know how to get past any of this so that I can be healthier. I know the glucose levels can be managed (because I've done it before, albeit briefly), but it never lasts because I am so depressed all the time.
Glad you posted this. I've been having issues too. Thought the change in attitude I noticed in these doctors was me not them. Altho in the back of my mind I thought what is wrong with these guys...and girls. Had a couple ask *me* what I wanted to do. I'm not the one who went to medical school and who I am paying for their expertise. One I almost said, oh, give me a couple weeks to go to medical school and then I'll tell you. My mother was a career nurse and she would not have approved!

I really wanted to discuss my meds with my new doctor. I know this is not kosher but I have changed meds as the anxiety attacks were getting worse. So I went back to one I have used before. Was given them before a major surgery. Again my mother would not have approved! As a new doc he asked me a number of questions he wanted to know. Was initially impressed that he seemed to have looked at my record. By the time we got to my concern, the meds, he told me.....seriously... he said we are out of time. He said patients don't realize they are limited in time. They get mad but Docs really do care. Then he said how much he enjoyed meeting me and looked forward to working with me. BTW he's a primary care not a psych guy.

I had a question I thought was serious so asked a friend's daughter who just graduated from pharmacy school. Made it general. She told me not to bother asking my doc about meds. They don't get the training. Go to my pharmacist. Nice to know.

Know it's no help to know you are not the only one. Depressing not to have a doc you can trust to get dx right and actually help. So sorry this has been your experience. But it's not you. It is the profession. Lately they have been blaming errors on Covid. Covid doesn't put the wrong info into the computer so your glasses had the wrong prescription. But know you deserve better care and consideration.
 
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Freddyt

MyPTSD Pro
I'd consider figuring out a core plan (like health and sleep first).....and writing down a plan of attack.....what are all the things you can do, what things or resources do you need to find out about, and choose only one goal....what's the most important thing you need to do in your opinion?
This....

I think a change in frame of reference towards your health would help. Nobody else can care about your health until you do. You avoid doing the basics of living with a disease. You need to address your eating issues. You need to talk to your T and find out why you are avoiding those things.
 

Nano

New Here
I'm really struggling right now with something that has been an issue for a very long time.

As background, I have a degree in nursing (worked psych for several years, then got out of the profession). My father was a physician's assistant. My brother has worked for 25 years in physical therapy in a hospital.

I have had multiple, decades-long issues with healthcare. I've been misdiagnosed, not diagnosed at all, refused care I needed, been given the wrong medicine (as in, x was ordered and I got y instead or the wrong med was refilled and the dosage completely changed in error), have been tested unnecessarily, NOT told I had stage 3 kidney disease - shown in labwork - and then told by another doctor the lab results meant nothing, been medicated nearly 40 years for epilepsy, only to be told by the last neuro I saw that he thought it was all in my imagination, suffered long-lasting effects from meds (and was never told about those side effects to begin with), and so much more.

A year or so ago, I came to the conclusion that most are in it for the money and don't care at all about a patient's health. I also came to understand that most only follow their (inadequate) training and are incapable of stepping outside the box to help with the things that aren't completely covered in their books.

My last doctor said I likely had fibro and that I should "just push through" the pain. I've had low back pain for years and was told I had a lot of spinal issues - until my last MRI was read by a radiologist from my last job and he said my back looked really good for someone my age. My massage therapist seems to think that most of my pain is coming from tissues and fascia. I can't tolerate even light massage.

So...I have diabetes. When I was taking my readings regularly, they were ok until mid-last year when it was pretty high. I last went to the doctor in September, and told them about the blood sugar and, when I couldn't afford bloodwork, they shrugged (literally) and told me to come back when I had insurance. I still don't have insurance and the doctor has since moved out of state, so I also don't have a doctor anymore.

Honestly? It's been pretty stress-free in terms of my health. I don't check my sugars and I don't see a doctor. I did have my eyes checked a few months ago, and there was no sign there were any problems.

I did get new glasses and my vision is super-blurry close-up unless I hold the glasses up and look through the bottom (they are progressives). I went back to the eye doctor (a different one, though) a week ago and they adjusted them. Still having the issue. I saw her again today and she rechecked my eyes, saying the prescription was wrong.

She is going to have them fixed, but asked me to take my blood sugar because it can affect the results. I did. It was high. And here I am.

Anything medical/healthcare-related seriously triggers me. I get extremely anxious, very depressed, want to die.

A related issue is that I have huge issues with emotional eating. I don't know how to get past any of this so that I can be healthier. I know the glucose levels can be managed (because I've done it before, albeit briefly), but it never lasts because I am so depressed all the time.
Wow I am so sorry the hell you’ve been thru.
I don’t trust the medical community either
Do you know why you are triggered when it comes to medical things?
I am triggered by anything medical, any illness, or thought of illness. Which is always on my mind. I feel like I’m in constant trigger mode. My triggers i believe are from watching my sister die over a four year period which started when I was a preteen.
 

whiteraven

MyPTSD Pro
Do you know why you are triggered when it comes to medical things?
Yeah, I think I have been ignored so many times and pushed aside and harmed by medical care so much for so many years that I'm sure whoever I see is going to do the same. Over the last 40 years, I have done everything I could think of (and everything people tell me to do) and I always get shot down for it. It's never enough or I didn't do quite the right thing ororor. Not just by doctors, but by people who choose not to hear the whole story and just parrot what they have heard by doctors. No matter what I do, if whatever it is isn't resolved, then I was doing something wrong.
I am triggered by anything medical, any illness, or thought of illness. Which is always on my mind. I feel like I’m in constant trigger mode. My triggers i believe are from watching my sister die over a four year period which started when I was a preteen.
I'm sorry. That would be a hard thing to experience. I don't have any specific triggers like that; for me, it's just an accumulation of treatment (or lack thereof).

Thanks for responding!
 

Rosebud

MyPTSD Pro
Anything medical/healthcare-related seriously triggers me. I get extremely anxious, very depressed, want to die.
I relate to this, but also for different reasons.

I do think of it this way: all professions have about 2-4% who are outstanding, and an equal percentage who shouldn't be there or working with humans, and a lot of mediocrity in between. I have met some of the best and the worst. Like a friend said, "someone has to end up at the bottom of the class". But there's much, much more that can occur than that.

However, beyond what you can do or learn and apply on your own, it's a lot easier dealing with any of them if you're coming in on your own 2 feet rather than a gurney (and cheaper, too).

Hope you can start small on the meals. And eating without appetite is incredibly difficult.

Hugs to you.
 

whiteraven

MyPTSD Pro
However, beyond what you can do or learn and apply on your own, it's a lot easier dealing with any of them if you're coming in on your own 2 feet rather than a gurney (and cheaper, too).
I wrote this awhile back and have been doing everything I'm "supposed" to since. What I find really interesting with doctors is that they are actually more motivated to come up with an answer that works for you if you go in "on a gurney" (figuratively - I mean really sick) than if you go in upright. At least that's been my experience. It took the prospect of brain surgery, for example, for any of my doctors to care about my headaches (and yes, I had it and now the headaches are gone!).
 

Rosebud

MyPTSD Pro
Maybe easier for them to figure out what's wrong @whiteraven ?

Idk, I'm always possessed with minimizing, when I have to deal with them. I think it's a subconscious strategy to get away. (Same goes for me with clothes shopping, strange as it sounds. For the most part I just hate it, clothes 'fit good enough in the store' (whew) and don't fit 6 hours later!)
 
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