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“A Good Doc & Bad Doc”

My worst year of illness was 2017. For most of that year, I needed help standing up to pee in a bed pan that was two steps to the right of my recliner, where I lay, blinds drawn, all day, every day. Symptoms were severe, nonstop. I was routinely spoon-fed by my wife. Any noise would exacerbate my symptoms and I’d feel on the verge of dying. I’d have hypnic jerks and body shakes and experience severe retching, my vitals all over the place.

My eyes would be closed for roughly 85 percent of the day and I would have to lie completely still for hours on end because of the constant flares that felt like organ failure and as if the end was near. And, if I pushed beyond symptoms, I would crash so hard that I’d end up in the ER (which happened numerous times)—my entire face and arms going numb and vibrating fiercely, my resting heart rate exceeding 165bpm, my chest extremely tight, my stomach severely distended, a loss of bladder control, and other horrific body-wide symptoms.

That same year was the year I met my old therapist, Dr. Sanderson (they tell you to get one if you’re chronically ill), a Jungian psychologist and minister who looked like a jolly, portly Freud. He would come to my house 1-2 times per week because I was obviously too sick to go see him. Often, as I lay in the recliner unable to speak, he would perform guided meditations and, when finished, would say a lengthy prayer aloud although I’m not religious. Then he would fall silent. Sitting in a chair quietly by my side, he would sometimes tap his foot gently on the floor, or shift ever so gingerly in his seat. His calming presence was a relief for my severely symptom-riddled body, except for when his cell phone rang loudly to Pink Floyd’s “Another Brick in the Wall,” which would invariably shock me in my recliner. I adored the man.

(Currently, I no longer see a therapist.)

A few weeks ago, I had a positively ridiculous but not surprising talk with my new psychiatrist. He will—thank God—act primarily as my medication prescriber. He told me, “Chronic Fatigue Syndrome is psychosomatic, studies show, and fixing your chronic fatigue is doable.”

‘Great,’ I thought.

When questioned about my youth, I told him that I was a little hyperactive as a kid. He said that I have ADHD; I agreed that that might have been the case. And so, he said, “We’re going to treat your ADHD with Adderall,” even though I reported not having experienced symptoms of hyperactivity in a long, long time.

I don’t know if was the stupidest thing I’d ever heard or if it was some sort of paradoxical magical genius attempt—trying to treat the hyperactivity I may have had as a kid (but do not have as an adult)—by a man I am now completely mystified by.

Why must these doctors vary so dramatically in their knowledge, abilities, and skill sets?

Can we have a moratorium on crappy doctors unconsciously preying on the most vulnerable of patients?

Will all the good doctors of the world please stand up—and help us, please!

Comments

He told me, “Chronic Fatigue Syndrome is psychosomatic
Uh oh, are you going to keep this psychiatrist? Well, he'll prescribe your meds at least. It's so hard to be around anyone who believes ME is psychosomatic. Personally, I'd be afraid of him.

he said, “We’re going to treat your ADHD with Adderall,”
Yikes! I'm guessing you won't take the Adderall. I took it when I was moderate, and I'm pretty sure it took me down a few notches from moderate. Adderall is evil.
 
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Sounds incredibly familiar. So sorry for the struggles on your journey. Yes, we absolutely need a moratorium on crappy Drs with the most vulnerable patients. Its so brutally awful. I'm sure you are good at playing survival games, like many of us, with these people. May you play your games well....until better help or better days come.
 
Dr Robert Bransfield is a Lyme psychiatrist but I read that he works with children and adolescents.

However, I wonder if you could call his office and find out if he knows of a psychiatrist who works with adults. ??

He at least seems to be understanding of the fact that a physical disease can cause a lot of the mental health issues in people and not necessarily the other way around.
(Attached is an article from a magazine where he explains his views a bit.)

Anyway, maybe his office could give you names to someone who does virtual or phone visits. ??? I know, it's a long shot but that guy you're working with sounds...:cautious::eek::nervous::oh-dear::alien:

https://forums.phoenixrising.me/attachments/18-25-1-pdf.43217/ (pdf takes a moment to open)
 
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Dr Robert Bransfield is a Lyme psychiatrist but I read that he works with children and adolescents.

However, I wonder if you could call his office and find out if he knows of a psychiatrist that works with adults. ??

He at least seems to be understanding of the fact that a physical disease can cause a lot of the mental health issues in people and not necessarily the other way around.
(Attached is an article from a magazine where he explains his views a bit.)

Anyway, maybe his office could give you names to someone who does virtual or phone visits. ??? I know, it's a long shot but that guy you're working with sounds...:cautious::eek::nervous::oh-dear::alien:

https://forums.phoenixrising.me/attachments/18-25-1-pdf.43217/ (pdf takes a moment to open)
Thank you, Judee. Very kind of you. I may do just that. And yes, I’m repulsed by the guy I’m working with. I’m just sticking with him for now ‘cause of my medications.
 
Hello @Cloudyskies.....As someone who knows, I apologize for all of the "know it all" doctors out there and would like to see you focus on the really good one you had at one time. It's hurtful, I know, when someone doesn't believe us 100% of the time.

On the other hand, if the symptoms of tonsillitis weren't obvious, most doctors probably wouldn't believe it existed either. In other word, something is wrong with you and it must be very humbling (& a huge personal defeat) to be the expert who doesn't know what it is. You know, your wife knows....and in reality this is probably the most any of us can expect. This remains: You're ill and you'll have periods of ups and downs throughout all of it. We can only see some of the illness in retrospect...we can't see he future, so we learn to live with our reality and always hope.

I have found (in my many years of dealing with this...probably 35-40 after diagnosis) that kindness is the the one thing that is apparent no matter what the specialty may be. I've had doctors who "shouldn't know" who beat the experts hands down when it comes to understanding a nugget of truth that is this illness. Perhaps they or someone in their family suffered the illness....they have an interest, well what difference? The fact is this: You won't give up on the entire medical field because you didn't find the "one" at the beginning of the illness. So hope is what we reach for and yes, sometimes it's more readily available than others, but today we're inching closer and closer to doctors who at least have heard of the illness and know something about it. They aren't quite so ready to say that it doesn't exist, are they?

I've used a therapist off and on for probably 40 years. Thank goodness that we fell into her capable hands to begin with....I've heard some pretty appalling stories. I also have friends who are therapists, counselors and those who were psychiatrists and saw a rapidly changing world before them. All things change and it's something we should remember from the beginning of learning about something....and in its way, it's progress even if it isn't directed to us at the time.

Imagine the embarassment this "expert" will face when someone eventually has proof of this illness. That's a whole lifetime of being believed down the proverbial drain. I'm now more excited by the person who does know something, the one who will seek a little more, the one who is in retirement and yet hasn't earned what he could have if he/she hadn'r been a doubting Thomas to begin with. The others are simply old news, aren't they? Yet we let them win so many times....then we have to turn to ourselves and wonder why?

I just spoke with my neurologist who had been hospitalized with COVID over the past week himself. His thought: Me and how I was doing, after his wife in hospice, of course. He was the first gem brought into my life because of this illness...and it's not just me, he treated all of his patients with respect, kindness and humor. I've met a few like him and fortunately I can go up against the rest when it comes to saying it's not believable. Yes, it hurts not to have an exact name and diagnosis, but we're only part of the whole....others have gone long before us.

You're one of the fortunate ones....you know there are good therapists out there because you had one and with time, you'll find another. I don't know what happened and it's OK that I don't, but you did find relief and the presence of someone who believed you even if was for the accumulative time of 2 hrs./wk. That's more than most on here will ever find. So to them, take the greater message....there is hope, it's muted but is getting louder all of the time. I would also like you to know that as I write these words, I'm suffering greatly because I can't get medication for a pelvis that has fractured in five places. It hurts and matches my mood....but it isn't going to win, oh no.

It would be heavenly if everyone agreed upon everything, but the world just isn't that way. If that were the case, we wouldn't have the rare minds that try something different, think in a different way and offer more to us than their bank balance.

I, too, have just come through a period of being sick, sick, sick of doctors and then I remembered the many jewels along the way. The people who help position me for me an MRI, who try to make me as comfortable as possible....so many, many good people and yet why should the one negative that we find overwhelm them? Find another docotor....one who specializes in chronic illness and isn't going to tell you what isn't your truth, your fact. We'll all suffer at some point, some perhaps more than others....I can't speak for that.

I find the essence of kindness to be the best smelling scent around. It was given to me by someone else, and I've passed it on to many often when I haven't felt it myself. It works its magic though and I have a whole cast of characters who make it easier for me to believe in it. My husband, my children and those few friends I have left. I'm not going to pick at the scab that can't heal when I can proudly bear the scars that I have....and I can move through my day looking at them.

I know you didn't come here looking for advice, I understand that. Sometimes though, we need it without realizing it and that makes us stronger when we do. You're the type who will find another therapist at some point, it's not written anywhere that it will be easy, but you'll forge ahead and that therapist will also learn from you. I think you'll agree that's the best that can come out of all these relationships....learning, extending kindness and above all, empathy. I wish you well. Thanks for writing your blog. Yours Lenora.
 
An ancient Chinese philosophy… one I’ve found truth in:

“If a doctor can make sure you are always healthy, and before you get sick, he has already treated the illness, this type of doctor is best.

If the doctor cannot tell before you get sick, but can heal you when you get sick, this is the middle level doctor.

If the doctor can only treat you when you already have a terrible disease, this is the worst type of doctor.”

To me the best doctor is the self, everyone else are assistants.
 
An ancient Chinese philosophy… one I’ve found truth in:

“If a doctor can make sure you are always healthy, and before you get sick, he has already treated the illness, this type of doctor is best.

If the doctor cannot tell before you get sick, but can heal you when you get sick, this is the middle level doctor.

If the doctor can only treat you when you already have a terrible disease, this is the worst type of doctor.”

To me the best doctor is the self, everyone else are assistants.
I agree. Just wish I knew more about the mysteries of the human body.
 
Hello @Cloudyskies.....As someone who knows, I apologize for all of the "know it all" doctors out there and would like to see you focus on the really good one you had at one time. It's hurtful, I know, when someone doesn't believe us 100% of the time.

On the other hand, if the symptoms of tonsillitis weren't obvious, most doctors probably wouldn't believe it existed either. In other word, something is wrong with you and it must be very humbling (& a huge personal defeat) to be the expert who doesn't know what it is. You know, your wife knows....and in reality this is probably the most any of us can expect. This remains: You're ill and you'll have periods of ups and downs throughout all of it. We can only see some of the illness in retrospect...we can't see he future, so we learn to live with our reality and always hope.

I have found (in my many years of dealing with this...probably 35-40 after diagnosis) that kindness is the the one thing that is apparent no matter what the specialty may be. I've had doctors who "shouldn't know" who beat the experts hands down when it comes to understanding a nugget of truth that is this illness. Perhaps they or someone in their family suffered the illness....they have an interest, well what difference? The fact is this: You won't give up on the entire medical field because you didn't find the "one" at the beginning of the illness. So hope is what we reach for and yes, sometimes it's more readily available than others, but today we're inching closer and closer to doctors who at least have heard of the illness and know something about it. They aren't quite so ready to say that it doesn't exist, are they?

I've used a therapist off and on for probably 40 years. Thank goodness that we fell into her capable hands to begin with....I've heard some pretty appalling stories. I also have friends who are therapists, counselors and those who were psychiatrists and saw a rapidly changing world before them. All things change and it's something we should remember from the beginning of learning about something....and in its way, it's progress even if it isn't directed to us at the time.

Imagine the embarassment this "expert" will face when someone eventually has proof of this illness. That's a whole lifetime of being believed down the proverbial drain. I'm now more excited by the person who does know something, the one who will seek a little more, the one who is in retirement and yet hasn't earned what he could have if he/she hadn'r been a doubting Thomas to begin with. The others are simply old news, aren't they? Yet we let them win so many times....then we have to turn to ourselves and wonder why?

I just spoke with my neurologist who had been hospitalized with COVID over the past week himself. His thought: Me and how I was doing, after his wife in hospice, of course. He was the first gem brought into my life because of this illness...and it's not just me, he treated all of his patients with respect, kindness and humor. I've met a few like him and fortunately I can go up against the rest when it comes to saying it's not believable. Yes, it hurts not to have an exact name and diagnosis, but we're only part of the whole....others have gone long before us.

You're one of the fortunate ones....you know there are good therapists out there because you had one and with time, you'll find another. I don't know what happened and it's OK that I don't, but you did find relief and the presence of someone who believed you even if was for the accumulative time of 2 hrs./wk. That's more than most on here will ever find. So to them, take the greater message....there is hope, it's muted but is getting louder all of the time. I would also like you to know that as I write these words, I'm suffering greatly because I can't get medication for a pelvis that has fractured in five places. It hurts and matches my mood....but it isn't going to win, oh no.

It would be heavenly if everyone agreed upon everything, but the world just isn't that way. If that were the case, we wouldn't have the rare minds that try something different, think in a different way and offer more to us than their bank balance.

I, too, have just come through a period of being sick, sick, sick of doctors and then I remembered the many jewels along the way. The people who help position me for me an MRI, who try to make me as comfortable as possible....so many, many good people and yet why should the one negative that we find overwhelm them? Find another docotor....one who specializes in chronic illness and isn't going to tell you what isn't your truth, your fact. We'll all suffer at some point, some perhaps more than others....I can't speak for that.

I find the essence of kindness to be the best smelling scent around. It was given to me by someone else, and I've passed it on to many often when I haven't felt it myself. It works its magic though and I have a whole cast of characters who make it easier for me to believe in it. My husband, my children and those few friends I have left. I'm not going to pick at the scab that can't heal when I can proudly bear the scars that I have....and I can move through my day looking at them.

I know you didn't come here looking for advice, I understand that. Sometimes though, we need it without realizing it and that makes us stronger when we do. You're the type who will find another therapist at some point, it's not written anywhere that it will be easy, but you'll forge ahead and that therapist will also learn from you. I think you'll agree that's the best that can come out of all these relationships....learning, extending kindness and above all, empathy. I wish you well. Thanks for writing your blog. Yours Lenora.

Lenora, I am sorry I missed this earlier. Good thing I scrolled through the comments again. I very much appreciate your words and advice. And I agree with you wholeheartedly, that kindness in a doctor is a most important quality. My wonderful previous therapist wasn’t covered under my insurance, so I had to drop him for financial reasons, but he was indeed the best. Sorry you are suffering and in pain and thank you again for taking the time to write this.
 

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