Thoughts on paranoia, "treatment," etc…When you are paranoid, you are the Center of the Universe, yet you suck

Wow, I had to go way, way back, and I found this:

pretty much a description of what I thought was the cause of the “anger machine.”  This is a phone call from the hospital when I’m describing how I felt since October.  It was all kinda unfolding just then.  But what they discovered was that there was indeed something wrong with my kidneys, a condition called diabetes insipidus due to having taken Lithium for 12 years.  The doctor who gave me lithium did not monitor my lithium level properly.  My parents, I recall, were disturbed about this.  I told them to mind their own business.  They would call Dr. C and nag him.  They had trouble with Dr. C to begin with over billing.  He was in Massachusetts but not far from the Vermont border.  They asked him to please become a Vermont Medicaid provider so they would not have to pay so much of the bill.  He complained that it was too much paperwork.  They took the trouble to mail him the paperwork and demanded that he fill it out.  This went back and forth and the long distance calls were expensive for my parents.  Meanwhile, writing the prescription for this lithium level to get done would have cost Dr. C nothing and my insurance would have paid for the blood test.  But he insisted that if my level was off, he would be able to tell.  Meanwhile, I was a shaky, pimply, bloated doped up mess.  I was sick of the hour drive all the way to see him, never mind that I could barely keep my eyes open while driving.  I believed he was more competent, certainly, than any of doctors in Vermont.  There were no therapists around, only this doctor, Dr. C. and his multitude of pills, Lithium and one antipsychotic after another.  Finally, I decided he himself was delusional, and I fled.  I moved in with my parents temporarily with intention of finding my own place in the Boston area, somewhere, anywhere I could find a cheap apartment.  I figure this was Boston and there must be more competent people in the Medical Hub of the Universe.

What became of Dr. C?  Oh, I did find out.  See, I found out through my friend A.  Turns out Dr. C did not have a license to practice medicine.  He got booted out.  Yep, that ‘s right.  I don’t know the whole story and I can’t find out any old dirt on him.  I think it’s all become hush-hush by now.  The institutions where he used to work have covered it all up.  As far as I can tell, it’s all been wiped from his record.  You can Google it and there’s nothing.  I don’t see “malpractice” anywhere and I don’t see “practicing without license” anywhere.  I don’t see any record of his having worked at Gould Farm, where I met him.  I have no clue if he’s alive or dead.

He was a nice guy I guess, just misguided.  “A” said he had a secretary and she wasn’t doing his job, but to tell you the honest truth, I never saw this supposed secretary.  I don’t think he had a secretary.  I think he did his own paperwork .  My parents would have known about this secretary because they would have gone through her regarding Medicaid.  When I called him, he picked up his own phone.

What was this “black box warning” I spoke about in the recording?  Dr. P, my current psychiatrist, says it was not a side effect of Imipramine, but that it was my paranoia.  I must have begun to feel paranoid around the time I began taking Imipramine, or Desipramine, which would have been last fall, like October or so.  I felt like I was getting the “black box warning,” that agitation feeling.  I was really, really scared, and I kept it all secret.  I thought what  I was going through was from the antidepressant, but the antidepressant was helping with binge eating, so I didn’t want to stop the med.

The paranoia didn’t go away and of course, I was surprised because I mistakenly thought it was temporary.  I was wrong.  I lived with it and lived with it.  At the time that I made this recording, I was hoping that maybe they’d find that this “anger machine” thing, whatever it was, came from the kidney problem, and if they could solve that, the whole problem would be solved.

Well, they were wrong about that, too.  As far as the anger machine went, they just threw their hands up in the air.  I left the hospital with the problem unsolved.

The only question that got answered was, “Why do I drink so much water?”  I left pissed off (as you know), scared, angry, with nothing solved as far as my eating disorder goes, and of course I was thirsty and dehydrated.  They didn’t even treat the binge eating I came in for!  They know nothing about binge eating there.  They do not treat this behavior at the inpatient level and they should have been straight about this with me to begin with instead of stringing me along.

So it was my psychiatrist, Dr. P, who told me that the “black box warning” I describe in this recording was not from the Imipramine at all.  It was the insidious creeping up of psychosis as a result of being entirely off antipsychotic medication.  You think you’re fine and you don’t know it’s happening to you.  A doctor might ask, “Do you see things that aren’t there,” or, “Do you believe things that aren’t true,” but how do you know this if you are psychotic to begin with?  How do you know these beliefs are bizarre?  If you are psychotic, you don’t recognize that your beliefs are unusual.  You think you are normal.  You think something’s wrong with everyone else.

When you are paranoid, you feel persecuted.  You feel wronged.  It’s incredibly uncomfortable.  You have very low self-esteem, and yet when you are paranoid you are always the Center of the Universe.  You are always very, very angry and you feel that everyone is angry at you and everyone is centered on getting back at you.  Everyone is onto you.  All eyes are upon you.  When you walk into a room, they are all looking at you.  There are always cameras.  You are so, so important, and yet you suck.

It’s so perfect being Jewish and paranoid.  Oh, I can be anorexic and persecuted and paranoid too.   See, I fell into the role.  Any kind of disabled and discriminated against will work fine.  I got back on my antipsychotic and poof!  Paranoia gone.

Insomnia plays a role in paranoia.  Problem is, anorexia causes insomnia.  The insomnia I’m going through now is purely physical due to past starvation.  No, I do not have nightmares, I’m not anxious or racy at night and I do not have poor sleep hygiene.  Peggy Claude Pierre mentions this insomnia frequently in her book, which I am now reading, but I have not gotten to the specific cause.  Apparently she is going to lay it out, or I hope she does.  I’m wondering if it has to do with protein or water balance.  Lots of the girls at the hospital were given sleep meds, but I don’t want to go that route.  Most were given Seroquel to make them gain weight, by the way.  The nurse freely admitted this to me when I confronted her. The patients were routinely lied to about this side effect.

So, what now?  Where do I go from here?  What goals do I set?  What can I accomplish?  

How can I change the world?  How can make life better for folks like me?  Folks who are misunderstood and misinterpreted and misdiagnosed?

How can I see to it that folks with eating disorders get treatment that is accessible for EVERYONE, treatment that really works, treatment that isn’t forced, treatment based on choice and knowledge and mutual trust and understanding?

How can I see to it that nobody gets me discouraged or convinces me to give up the fight?  This is not “phase”…..I really AM going to make these changes, I really AM going to follow through!

Maybe the first step is to make sure I keep after DMH and see to it that my “telephone rights” human rights claim from about three weeks ago is followed up on.  So there’s a phone call I need to make.  Those a-hole staff have not seen the end of me yet…when they see those walls built around the phones, they will be shaking in their boots, knowing that yes, that obnoxious patient they lied to and tried their darndest to SHUT UP did indeed get something done!

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Feedback and comments welcome!