Tag Archives: Zyprexa

Brain, Health, Medication, Mental Health, Schizophrenia, Uncategorized

Schizophrenia Medication: Should I or Shouldn’t I?

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This is from a 2011 entry on my About Schizophrenia blog. However I have changed it and updated and added to it, so I thought I would post it here. Dunno how many of my wordpress readers might not have seen the first version at all. I have also added a discussion of Xyrem, my sleep medication to the “mix” as I consider it a “minor miracle” that has been underreported and never before used.

Okay, I admit it, I have had my conflicts surrounding schizophrenia and the issue of medication — whether to take it, when to take it and what, if anything, I will take. In fact, I admit that this remains an issue, though less of one so long as there is a medication that I find inoffensive. But more on that later. First let me address the problem of that conflict itself.

In the “old days,” which is to say, during the 1980’s and early 90’s, I was treated with the so-called “typical” neuroleptics like low-potency Thorazine and Mellaril (in doses as high as 1500mg which left me with an eye problem known as chorioretinopathy, which activated once and could reactivate at any time and potentially lead to blindness…). I was later treated with high potency, lower dose drugs like Haldol, Trilafon, and Prolixin, either orally or by long-lasting depot injection. Although I was compliant with these meds for a while, I eventually found them so troublesome that while hospital doctors insisted they “helped” me, more often than not I would take them in order to be released from the hospital, only to stop them again.

This became a pattern that led, familiarly, to what was called the revolving door in and out of psychiatric units. While I understood this only vaguely, I found the dulling side effects, not to mention the physical discomfort of these medications so terrible that even if not taking them meant yet another hospital stay, nevertheless I often refused — in fact I could not bear to take them despite the psychosis that resulted. Had anyone bothered to ask me why, I would have told them that the drugs’ side effects were simply worse than the illness; they were hell and there were no two ways about it.

All the hospital staff and outpatient doctors and nurses believed that no one could possibly wish to choose “madness” over mere drug side effects, but I was someone who frankly preferred the former to the agony of the latter.

Now, while I speak as if I knew I was psychotic, that is not altogether true. All I knew was that I was being hospitalized a great many times, that I had been told that if I took the pills I was given, I would be able to stay out. I did not at the time believe that I had any illness at all, and did not for a very long time believe it. However, what I did want was to avoid the often brutal treatment of various hospitals, and their use of four-point restraints, sometimes for days at a time, spread-eagled tied to the corners of the bed, in the 90’s , and that was what sometimes persuaded me to take them, not the understanding or agreement that I was ill.

But surely I was not alone in feeling that the side effects of the meds were worse than the consequences of not taking them. There would not be so many people with schizophrenia who like me refused them, if so. Whether I believed I was ill and needed to take medication or not, it hardly matters when the pills I was given caused unbearable pain, or so deadened me, I felt, that my life was scarcely worth living…

I know those meds in particular– the older drugs both lower potency and higher potency, at almost any dose, caused me physical side effects and physical suffering. That alone was enough to make me ambivalent about taking them. What I never knew, and still do not really know for certain, was whether the drugs themselves emotionally deadened me, or whether what I came eventually to appreciate might in fact have been illness after all was the cause of my feeling deadened. Did I lack enthusiasm and passion because of the illness or because of the medication side effects?

Through the early 90s, I was on Prolixin as the least distasteful anti-psychotic, and having been more or less forced to take the long-lasting depot medication, I could not “stop” taking it, not once my weekly injection had been given. Then finally, Connecticut’s Medicaid program started paying for Clozaril, and I was among the first people in the state to try it. All went well at first, and I seemed to be off to a good start. But unfortunately, once discharged to home, “all hell broke loose” with devastating side effects that were if anything worse than anything I had experienced on Prolixin or any other older neuroleptic. This may have been unusual, I do not know, but I had horrendous and immediate side effects: sensations of impending doom that made me afraid of falling asleep; then an inability to swallow even my own saliva; a kind of uncontrollable jerking, seizure-like, while I was conscious; and when I was awakened — nearly forcibly — in the morning, I experienced an unbearable sedation that took hours to wear off…

I gave the drug several trials, but I was not disappointed when I developed a very low white cell count and was no longer permitted to take it. After that, it was back to Prolixin, and back to what had never really lifted, not even with the so-called awakening miracle drug of Clozaril: the deadened feeling. I felt hopeless, as if nothing would ever really work better for me, but then again, why should it when I didn’t really suffer from an illness like schizophrenia to begin with?

My therapist, the one who had tried me on Clozaril so many times, left her practice, and I was shunted to a nurse-therapist at the Clinic, one who took an immediate disliking to me. I felt a similar antipathy for her and so with no love lost between us, it was a huge surprise to me when, after she gruffly suggested I try this new drug, called Zyprexa, that I woke up only a few days later feeling, well, not only awake and better, but awakened. Awakened, alive, even reborn. I could read, I could remember what I read, I could study and I felt enthusiastic about it all in a way that before then I could only dream of.

Oh, I knew that I wanted to feel that way, but it had literally only been a dream or a wish before then. I had been vaguely hungry for this, but until I took Zyprexa, it seemed that I had been completely unable to grasp or fulfill my wish to do any of it. On the drug, I could pay attention and concentrate for longer than I had in decades, and learn things and retain what I learned. I felt that I had a whole lifetime to make up for, and started to make up for lost time. What is more, I was so confident in my ability to read and study now that I had found a drug that helped me, it seemed entirely possible to do so.

Why do I tell you this? Because while Zyprexa was the real miracle drug, a medication that did not so much give me back my life as give me a life I truly never had, it was, as I may have said before, also the side effect drug from hell. As I would soon discover, my weight started to increase almost from the first week, and it kept going up and up, despite my longstanding history of strict weight control and a vegetarian diet. Also, it is a very sedating drug, so that I had to fight off sleepiness that added exponentially to the sleepiness that my narcolepsy had caused for years.

Luckily my psychiatrist soon thereafter was also a sleep specialist; she had no problem treating this with the appropriate drug, Ritalin, and so it was not the problem it might have been, but the weight issue was, and is in fact, one of the reasons I have on-going conflicts over taking that particular medication.

Side effects of any sort remain 1) the major reason I will not take a given medication, and 2) the major reason I do take the medications that I take. If this surprises you, let me explain. First the latter: Of my present medication regimen, the salient ones for this discussion are Abilify and Geodon, and I take them not for the reasons my psychiatrist may have prescribed them, but for their “side effects,” at least as I perceive them. For instance, it was only once I started taking Abilify combined with Geodon — I could never tolerate Abilify by itself — that I found myself able to do art, and to write so fluently and so abundantly as to be unable to stop once I start. In fact, I call these two my output combo, medications that make my creative productivity enormous, whereas Zyprexa is just as literally my input drug, my intake drug, insofar as I can read and absorb information, and also eat, eat, eat.

For the same reason, though, I will not take Zyprexa because of its intensely dispiriting side effect of causing obesity and with it diabetes and and the concomitant conditions that go along with that. I wish I could take it: I miss reading terribly, miss the heady feeling of intellectual confidence and the ability to learn and remember and such.

Unfortunately, despite my early paean of praise for Latuda, I have to admit I have reconsidered it, as I found that though I cleaned my apartment regularly, I slowed down on my drawing and writing, and at the same time had not found myself interested in reading, nor even in watching my usual documentaries…It felt like a kind of straitjacket. I had weathered the psychotic crisis, but after that its usefulness seemed to be limited, and limiting. I agreed to take it, if necessary, in a crisis, but aside from then, I did not find that it helped beyond attenuating the worst symptoms.

Actually, in the two years since i took Latuda that one time, i have come to believe that the drug did little or nothing for me. I think that i simply managed to pull myself out of a bad time by myself… It can be done, and most especially when i am not facing that critical six month vulnerability time. And this was in fact in between the six months – during a period of relative strength. So my sense is that the latuda functioned mostly as a placebo, and that i myself pulled myself out of trouble.

In truth, given my druthers, in a crisis and forced to choose between one hell versus another, I might prefer Zyprexa over Latuda, since the benefit of the first outweighs the complete lack of any positive benefit from the latter. Which is to say, even if both happened to treat psychosis, only the Zyprexa has any positive side effect in addition to that. Latuda only has the negative side effect of strait jacketing me in the process.

The next two paragraphs were in my original post…i keep them as is here only so that i can follow up with a “but now” discussion of how things have changed:

One other “benefit” from taking Zyprexa, discovered within just the first week or so, was the realization that a medication made a difference, a huge difference. The conclusion I began to draw from this was not so sudden, and it was reluctant, but eventually I had to decide that perhaps, if a medication made such a radical difference, and a medication, Zyprexa, supposedly “treated an illness called schizophrenia” perhaps, whether it was schizophrenia or not, I did have some illness. Surely, if this medication, which did not help most people, made such an enormous difference for me, it must mean something…

I was reluctant for a long time to answer that further, and still cannot say a lot more without cringing. But if indeed there is a real entity, a real singular illness of schizophrenia, as opposed to a syndrome, and if Zyprexa really is a treatment for it, an effective and appropriate one, then god bless it, I will accept the diagnosis. I might still refuse to take the drug, but I would accept that I have the illness and continue to say that Zyprexa was the best miracle drug from hell I ever took!

But now i still cringe and cannot use the word schizophrenia without wanting to say, Psychiatry is an art of making an opinion…and even more often of making judgments. Two worse things to base a field of so-called medicine on i cannot conceive. Yes, Yale diagnosed schizophrenia, and did NOT decide to diagnose a personality disorder on top of it, which was, truth to tell, a huge relief*, because I KNOW that it is only the abusive hospitals that do that, and they diagnose an Axis II disorder largely to blame the victim, blame me for PTSD behavior that they induced! You simply cannot seclude or 4-point a vulnerable patient, viciously and brutally, and expect that person not to respond with traumatized behavior, which is predictably unpredictable…But can be described and has been.

In any event #1 how interesting that Hartford Hospital, in the 90s, when it was independent of the IOL, and often kept me for months, never saw any personality disorder in me when Sharon Hinton was head nurse…ONLY “schizophrenia, chronic” as I would read upside down on my admission papers. Personality disorders are lifelong and chronic. You do not suddenly develop them midstream in your life. It makes NO sense that Hartford Hospital as the IOL would now suddenly “detect” an axis II borderline disorder that they never did before. No, in fact, what happened was they traumatized me, and then blamed the victim for TRAUMA behavior…Or actually, for no behavior at all, since I never even resisted the restraints except once. And then the last night when I screamed bloody murder. And I did not even know that I would be released the next day. That was purely chance…and good luck.

In any event #2, I also took Zyprexa at Yale Psychiatric Hospital in February and March, and this disturbs me, because while I did some reading, my art output was tremendous as well. And Zyprexa was supposed to be only an INput drug. Of course, I gained ten pounds in two weeks…Worse, ever since I left, and got back on the Abilify and Geodon, and am taking NO Zyprexa, I haven’t done a thing, no poetry, no artwork of any sort. Not even a single trading card.

I do NOT believe in schizophrenia, not for me at any rate. I do not think I even need Zyprexa. But on the other hand, I wish I could take it, because I feel so much better when I take it and I do not know why. I mean, even when I am not fighting voices, I feel better on it. WHy is that? That doesn’t make sense…You should only take Zyprexa for symptoms that’s what I have always felt. Once the voices go away, forget it. Yet, yet, yet…I know my brain works better on it, and always has. It doesn’t seem fair. (Not that life is or should be fair…But I mean, really, my single most hated drug in the arsenal, and it is the one that works best and not only that it works really well…???) CRAP! My biggest fear is gaining weight. I understand how petty that is, and I should be bigger than that spiritually, but I am not. I simply cannot do it.

So there I am, and that’s the picture. Now you know how two-faced and hypocritical I am about medication. I tell people to take theirs. Or not. And I wont even take the one medicine that I know helps me, because it will make me fat. That is really the only reason I do not take it. The only reason. It is that petty, and that simple. But that impossible.

One additional drug that I take now, in addition to Abilify and Geodon and Ritalin is Xyrem, sodium oxybate, an anti-narcolepsy sleep drug, that helps me get delta sleep at night, slow wave deep sleep and to need less Ritalin during the day. As far as I am concerned the less Ritalin I take the better. I have never liked needing it or taking it, but I have always needed it just to stay awake during the course of a normal day. I haven’t gotten through a single day without several periods of sleepiness since college, when I would fall asleep at any time of the day, very unexpectedly.

Now that I take Xyrem at night, twice a night, though, I need fewer pills for alertness during the day, which is great. I also find that my appetite is vastly reduced, which might help with the Zyprexa, except that I could not take the two drugs together, as they are both very sedating and cannot be combined…What it does do is prevent any confusion of dreams with reality. I simply do not remember any dreams, and do not confuse the two any longer, I do not know why. I am not sure if this effect would hold true for all or if it is just for me. It is possible that dreams would increase for others. I only know that I used to have a huge problem, before the Xyrem and the other meds, with nightmares every night and being unable to tell dreams from reality…but now that I no longer dream I simply have neither problem at all.
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*A huge relief: When I write that I am glad and relieved they did not Dx a borderline personality disorder, I must tell you that I am aware that in the hospitals where I have been abused, they dx such Axis II disorders as a way of communicating to all the staff that a patient is “manipulative and devious” and basically you cannot trust anything they say. I KNOW this to be the case because I have two psychiatrist siblings so I have gotten the lowdown, ie the truth about such terms in hospital REALLY mean. And to be called “A Borderline” in a hospital, is not a good thing. It is shorthand for being called a Royal Pain in the Ass.

Now, having Borderline Personality Disorder is something different from being called A Borderline…And having the disorder means you are suffering a great deal ALL the time. But in the hospital, when they claim to “suddenly detect” borderline personality, it is something wrong with the hospital, not the personality. And my point is that when they have brutally secluded or restrained a patient, that is NOT the time to suddenly be detecting anything except iatrogenic PTSD…

Art, Art and artwork, Health, Mental Health, Mental Illness, Middlesex Hospital, Seclusion and Restraints, Trauma, Uncategorized, Zyprexa

“The Scream” plus an update…

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In the midst of re-experiencing trauma, sometimes all you can do is scream, even if it is silently and only in paint…I hope this speaks to some of you who may feel as I do, often or even just once in a while. It took a lot to get this out, but I felt I did convey what I felt.

I am reposting the next one, a very painful if a not very skilled drawing, because I made some changes. I put a very mean smirk on the face of the woman in the front, who is meant to be facing us and pointing over her shoulder, though it was hard to get this in, given how little space I’d left myself… Also, I wanted to change the face of the man kneeling on me, and strength the look of the grip of the hands on me. If you compare the old version to this one, you will also note that I am purely naked here where as in the other, I have underpants on. This is the accurate one, but I didn’t understand that at the time I started the drawing. Alas, or perhaps this is good, I am rapidly recalling things I had not for two years about my experience at Middlesex. At least I remember stuff that happened BEFORE April 28th. For the other two restraints incidents, I still have no recall whatsoever or what I suspect is mostly confabulation drawn from what I read in my chart, though of course I cannot be certain. In any event, what I am remembering is not good at all, and I cry a lot…it is very difficult, and I feel so very very alone, because NO ONE understands and can talk to me, or more to the point can even stand to listen to me talk or cry about it. But it is difficult even to keep it under wraps all the time. If you have survived trauma, I think you know how it is. And that is why I avoid people when I think I cannot be “good enough company.” I don’t want to bring my friends down, but I cannot control the tears and shakes when they start…But the picture forthwith. Although it is disturbing as is, be aware that in the real incident, there was a great deal more violence, and more guards and staff members involved…these are just a paltry few. I simply didn’t know how to draw a crowd or a crowded room yet!

This is the incident before they used 4 point restraints on me that I so obsessively describe in Wagblog…Of course I take some poetic license with drawing the bed there and at the ready, as it was not there or ready or even in that room and I was quite calm and certainly no danger to anyone by the time they decided to punish me 
Takedown on N-7 Prone Restraint Detail: Me, naked — and this is a hospital?

This next picture I did as an attempt to express the guilt and shame I feel over having been traumatized at all. But I do not think I succeeded at all. Why? Because it became too intellectualized, with symbols like the Scarlet A and the guilt-crucifix, and even the hands wringing in shame, rather than pure expression…I want to do it over again if I get inspired to do so.

Shame Guilt and Ghosts is my attempt to portray my feelings of guilt at even having felt traumatized by so small an injury…but this doesn’t do it successfully, not so it seems to me at any rate.

The next three drawings were just “fun” or for practice ones. The first two are presents for Tim, simply because he likes cars and is so wonderful to me. The third was an exercise in drawing two people together, and was copied from an “old master”, the name of  whom I simply cannot recall at the moment. It might have been — nope I don’t dare guess! I would have to get up and search for the book, and I ain’t gonna do that at the moment — too danged lazy. Anyhow, here are 1) two  1973 Volvo Sportswagon ES 1800 2) jaguar XJS and 3) the sketch taken from the old master’s painting.

1973 Volvo ES 1800 with British Racing Green “colour” in the background to represent the color of Tim’s car.

My third car drawing for Tim, a Jaguar XJS (I forget the date but I believe it is the mid 80s (if I am not mistaken).
Herr Goose after revisitation for repairs…Click on the photo to make a close up and you will notice neck “feathers and the difference it makes with old fully decorated version.
I sketched this detail from an old master’s painting found in an art book. Wanted to capture the two women together, and the angle of their heads (I actually didn’t do a very good job but there you are!)

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NOTE: As I wrote this, “dream” talk, that is to say, nonsensical writings seemed to keep appearing in the middle of what I wrote. I seemed to find myself in another world every few minutes. I would write about that world, then “come to” and start writing about the subject below again as if nothing had happened. But when I reread the paragraph it made no earthly sense whatsoever, being an amalgam of two entirely different trains of thought. So a caveat: if some of what follows devolves into gibberish at any time, forgive me, and be patient. You can email me to alert me, if you wish, that would help. But otherwise, know that I will eventually come back more able to proofread and catch such idiocies…and fix them. For now though, you are on your own.  (The reason for these  brain blips, I think, may be, but may not, the  fact that I took a very small amount of Zyprexa today in order to be able to read and concentrate. 2.5 mg 2X a week should not make me gain weight, according to Dr C, But we thought it might do some good, without doing the usual harm. So I agreed to try it out once more, just at the minimal level as a PRN. Well, I find that I am very sleepy, have been ever since I took the pill, except for when I took a walk and for about 1/2 hour afterwards…and I do think that I slip into dreamworld while awake, and literally dream while writing this. Hence the gibberish.

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I have put the statement I read to the CEO and various administrators etc of Middlesex hospital on Youtube if anyone is interested in hearing it read outloud. Do a search for “Psychiatric restraints and seclusion abuse” and you should be able to find it if this link doesn’t work:  http://www.youtube.com/watch?v=vhZybDwMbzA  (I realize that I read it without much feeling, but it is hard to do so accurately and also look up at camera, and read without losing my place. Anyhow, it might be worthwhile to check it out.

The newest sorta development in the “case” this week was that a lawyer from the hospital, or someone who told my advocate he was a Middlesex Hospital lawyer, asked Wiley R (who is behind me 100%) “what does Pam want, what can we do to have her drop the complaint or withdraw her complaint to the DOJ and Joint Commission?”

Now everyone I told this to almost to a one, and immediately said this meant, “We are willing to pay handsomely in order to buy a gag order from her” I had trouble digesting such crassness, but to a one, those to whom I related the words of this inquiry told me the lawyer was insinuating something about paying me off. I mean: money. I felt slimed, completely slimed. For a few days this was the sole topic of my conversation, but to make a long story short, after I had decided to ask for several sessions with the hospital psych unit staff, educational sessions with me, to teach them how better to deal with patients, and have them experience forced restraints themselves…and so forth, my brother and I met with WR my advocate from the Protection and Advocacy (for persons with disabilities and mental illness) Office, and he informed us that the lawyer really was offering nothing, not even an official apology. Clearly, if so, then my real desire, to do hands on, face to face work with the staff that had so tortured me, was going to be out of the question, utterly forbidden. So we just decided in practically the same words, to let them “swing” in the wind.

In point of fact, when WR said that the DOJ might bring them up “on charges” if it was warranted, I asked him why I didn’t do that myself. He looked at me, and then narrowed his vision looking at a point beyond me. “Hmm, let me ask around and I’ll see what we can do.” I hastened to assure him that it wasn’t malpractice I was after. I knew that I had no real case, even if the statute of limitations hadn’t just run out a week or a few weeks ago. After all, what lawyer is going to take me on  one a contingency basis, and what jury would find for me in any event, seeing as how I did not die in their “care” nor suffer “grievous BODILY injury” which of course is all that counts…as usual. I am not sure what sort of case I would have in any sense of the word now at all…But as I told him, that is in his hands, and certainly is his bailiwick  (and if not his than that of  my lawyer-friend, Sharon Pope’s. If there are other “cases” to be made of any sort, I am more than game, I am ready and on alert to go and do whatever is needed in the pursuit of justice and reform of the Middlesex Hospital psychiatric system. It was really shameful, and despite the Public Health Department’s so called investigation, it was such a shameful joke, that despite WR’s impassioned plea to investigate MY case, and the psych unit in particular, they did no such thing. All they did was go back to spring 2011 (ie looked at the records of the entire hospital, or one of two representative records from most of the units, except for Psych so far as I could determine…) and do a random case study to look for general evidence of irregularities. Sure, they found some, and one case even involved the ER use of unnecessary or at least excessive use of restraints in a dually diagnosed young man…

But NOTHING was even looked at that had anything to do with what they did to me, or even the psych unit in particular. NOTHING was specific to my complaint, so I don’t know how they expected this  evaluation to give them any sort of reasonable results. They may or may not have censured or sanctioned the hospital. I did not read the entire huge file of support the bill got over the years. But I got the drift and the worst punishment meted out for repeated violations seemed to me to be a whipping on the wrist with a flimp ramen. Period.

Yet I was punished by the psych unit staff time and time again.

I know, I know! I was loud, I was angry, I was impossible to “handle” — I know this. Partly this was par for the course for a Lyme disease flare up for me. But I think Lyme wasn’t all of it. Why else was I so irascible (aside from them giving me Abilify without the requisite Geodon…) if not in response to perceived and real threats from them? I am not generally irritable and snappy at Natchaug, and never was at Hartford Hospital in the 80s and 90s. ONLY at hospitals where the standards of care are coercion and control and abuse is the name of the game do I react with anger and hostility…I wonder why.

More to tell, more to say, but as I wrote in the first paragraph above, sleep is overwhelming my desire to do just about anything. I will try to get back to this asap.

Eating, Medication, Prisons, Psychiatric Unit, Psychiatry, Schizophrenia, Seclusion and Restraints, Violence

Mental Illness and Authority: Part II

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I started the post below as a response to a very kind email from “Mary” but it eventually got so long and involved that it became more of an essay than a letter. I hope she will understand why I put it here, rather than sending it to her alone!

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First, here is her letter to me:


Thanks, Pam.   I learned from your very well written account, “On Psychiatry and Authority.”  I felt like I was in the room with you, it was so descriptive.  I recently had a call from a man who is bipolar.  He said while off his meds, he was in an encounter with his girlfriend and was arrested on domestic violence or disturbing the peace charges.  He told the officers he was a psychiatric patient, but of course, jails have become America’s answer to mental illness.  The police threw him into a cell after booking him, then released a police dog on him in the isolated cell rather than simply locking the door.  He said the dog ravaged his leg, exposing bone, and he was taken to the hospital.  There may have been a time when only black mental patients were treated this badly, but the caller was white.  I wrote about more murders and abuses against mentally challenged people in my blog – Letter to Mary Neal’s Terrorists – http://freespeakblog.blogspot.com/2010/10/letter-to-mary-neals-terrorists.html

I am still undergoing much censorship, Pam, likely because my advocacy to decriminalize mental illness is a threat to the private prison industry.  Over half the inmates in America are mentally ill.  If they are released to community care under AOT programs or treated as hospital inpatients rather than prison inmates, depending on their offenses and functionality, it would not be more expensive for taxpayers, but it would negatively impact prison profits.

As I read about your brutal treatment in the hospital, I was so sad.  Here I am advocating hospitals rather than prison, and you were treated that way by psychiatric professionals.  The only way I can continue after learning what happened to you and others who were in abusive hospital environments is by thinking about people like my caller who was not only tossed in an isolated cell naked, but a vicious dog was sent in to attack him after that.  I also think about my brother Larry who was murdered under secret arrest because police were fed up with being his psychiatric caretakers.  Although hospital care is only marginally more humane than incarceration in some cases, there are fewer permanent physical injuries and murders among hospitalized patients.

Thanks for sharing your experiences.

Mary Neal
Assistance to the Incarcerated Mentally Ill
http://www.Care2.com/c2c/group/AIMI

And my response:

Thanks so much for your email and sympathetic understanding of the traumatic aspects of my so-called “treatment” at Muddlesax Hospital last April. Such treatment was, at other hospitals especially in the 80s and 90s and even in the early 2000s, so much worse — I mean in terms of real physical violence perpetrated against me while being literally, bodily, forced into restraints — that I was almost reluctant to write about such a relatively mild incident. But the humiliation of having to put myself into restraints was almost more unbearable than the, in some sense, honorable freedom to resist! It just riles me completely…How dare they put me in such an untenable position? Then again, I suspect it was intentional.

Nevertheless, I am very much aware that in Connecticut hospitals way too many people have died while they were in restraints, and this in the not so distant past. In fact it was investigative reporters at the Hartford Courant back in the late 90s —and their article entitled, I believe, Deadly Restraint — that served as a national catalyst in getting hospitals to stop the wholesale use of seclusion and restraints. At the very least it started a national discussion about the use and abuses of force in psychiatric hospitals and (I think) juvenile detention centers. (God forbid anyone at all should care about jails and prisons however…Those people obviously deserve it, they are criminals after all… Right?)

But even though most hospitals in Connecticut claim to have reduced the use of force to the most extreme cases, (they will force medication though, through the use of forced medication hearings) I do not believe that can be so. Because I cannot believe that I alone “deserve” seclusion and restraints and yet I have been subjected to such abuse time and time again. Until 2005, I was put in S + R at least once almost every time I was hospitalized and quite often multiple times, for many long hours. After 2005, I would say the incidence was reduced by about half. That means that half the hospitals still indulged in this abuse, one of them, as I wrote earlier in this blog, employing them almost every day for a week and a half!

Of the hospitals that did not physically restrain me,  most were still abusive, but more subtle about it…For instance, they would put me on Constant Observation, but then tell the “sitter” not to speak to me. Or they would institute the common but for all the commonness of it, still abusive policy, of making the one-to-one person being ignored sleep with her hands and head completely uncovered. Now, all hospitals are freezing these days, I do not know why. But it was well known that you had to bring a sweater or sweatshirt everywhere, because the air-conditioning would be out of control and everyone was too cold no matter the season. So to have to keep your hands exposed all night was cruel. But the reason that they insisted on it clearly had nothing to do with it being “safer” for the patient. No, it was punishment. That is ALL. The whole purpose of one-o-one in those places was punishment. You could not talk to the sitter, one, and the sitter had to follow you even into the toilet. And all the while deliberately ignoring you if you spoke to her..So what was the point, if they kept the close eye on you they were supposed to, they knew you could not hurt yourself.  So the point was simply to humiliate and torment the patient so they would beg for “freedom” and pretend or at least mouth the words “I am safe.” Those magic three words were all that were needed, but you had to say them so that the nurses could hear.

For many years, I believed that this was a hospitals-wide, state-wide, business as usual policy, the no-talking, hands exposed rules, and that it was reasonable. Until I went to Natchaug and Sharon told me that Natchaug didn’t believe that one-to-one should be “punitive” in any way. And by the way, she said that word, “punitive,” not I. Nevertheless, at Natchaug, no one made me sleep with my hands outside of the covers and the sitters freely spoke with me. In fact, once they understood that I needed them not to share their own lives with me, because then I would feel the need to take care of them, something that would not be helpful to me, they wanted to find out specifically how they could help me.

But back to the use of restraints. I am only 5’ 3” and from 2005 until 2010, I weighed between 92-105 pounds. Surely I could not have been that great a threat to anyone. In fact, at one hospital, one I will not name, fearing them so much I wouldn’t put it past them to take revenge, they had a somewhat better policy of dealing with agitated patients.  At a Code Orange, staff members from every unit converged on the “victim” (sorry but that is how it felt) and  “held” her until she could calm herself. Now, this “holding” often consisted of pinning her bodily to the floor, which itself could be anxiety provoking. And at least once, in my case, a male nurse who openly detested me, tried to pin me to the floor on my stomach, which I had read was something to be avoided as people had died when held down prone, as opposed to supine (on the back)! But in general the technique worked, if the victim was held down long enough. Basically, if he fought, there were enough people holding him down to allow him to exhaust himself without doing anyone harm. And then, when exhausted, he would calm down and either take PRN medication, or assure the head nurse that he would be okay now. It worked, though, no matter what I thought about it, or of the people doing it. And it did avoid all use of restraints, though of course by itself it is already a form of restraining people, it just avoided the use of mechanical restraints. That though, still makes a big difference…

Forgive me if I segue again into another digressive subject for a minute or two, but the subject of 2010, which recently turned the decade corner into 2011, brought to mind the fact that having taken Zyprexa (most of the time) since then has caused me to gain a fair amount of weight, another subject that is near if not dear to my heart. Oh, the damage that psychoactive drugs do! How dare doctors blame us, the people with schizophrenia, for it? Don’t we have enough trouble without being blamed for the side effects of the very medications that they prescribe? Do you know that for decades, and sanctified as Truth in psychiatry textbooks, they insisted, without any reason and making less sense, that schizophrenia itself was the cause for so many of us to be obese? That was utter nonsense to my way of thinking. Every single memoir about sz that I ever read revealed that the author had been thin UNTIL she or he was treated with antipsychotic drugs, and then, blammo, food becomes the enemy. Yet the shrinks actually insisted, against all the evidence, that it was the illness and not the drugs that was behind the huge % of patients exhibiting this “signal obesity”.

Well, all along I thought they were full of shit, pardon my french. No, I didn’t just think it, I KNEW it. I had not a doubt in the world. And you know what? I was right. The latest research has borne out precisely what I’d asserted all along: when investigators looked at a population of people with schizophrenia that for one reason or another had never taken antipsychotic drugs, they discovered that this neuroleptic-naive group was thinner than average, and that it was in fact the drugs that had made us obese, sometimes massively so, rather than schizophrenia. And it just infuriates me, not just the obesity, it is not just the weight gain the drugs cause, it is the fact that we patients have been blamed for something that they, the doctors and nurses and their GD drugs, inflicted on us. Maybe it is especially difficult for me, with my history of anorexia and my intense wish simply to disappear, but what about those who will die from drug-induced heart disease or diabetes?

I know, I know, Mary, you may be on the other side of this argument, or it might appear that way, because you want more treatment to be available, not less. I do in general agree with you: Prisons are overflowing with the mentally ill, who should never have been there in the first place. In fact, I think the prisons are overflowing with an awful lot of people, especially those of a certain darker-hued skin, for little reason more than the very color of their skin! I mean, tell me why Robert Downey Jr and Lindsey Lohan, aside from their celebrity status, get caught again and again with drugs and cocaine etc, yet are sent off to posh rehab centers, with a smile. But should you happen to be an unknown, POOR, god forbid mentally ill person of a darker hued skin (and let’s face it, a light/white South African immigrant would not be treated the same way as a dark-skinned someone with Nigerian roots!) if you are that person and you offend in some way just 3 times, well, then, you are sent away to one of California’s really “posh” ha ha ha penitentiaries FOR LIFE! Things like that just make my blood BOIL. And don’t get me started on the insanity of our drug laws!

But forgive me for going so far astray. It is just that the whole subject of prisons and what we do to people in them is a really sore point with me, and not just how we treat the mentally ill there, though that is about as atrocious as it can get…Need I even mention the “extra beds” in unused supermax prisons being used to house “unruly” MI prisoners? It makes me want to scream and throw up at the same time.

Well, no doubt this “essay” is both incoherent, in the sense that it doesn’t cohere properly, and just plain incoherent! I admit to a bit of laziness, as it is late at night, and i need to take my MEDS and go to bed. So, at the moment, I am not going to polish and fix it. I am going to pretend that since this is “only” a blog I can get away with shoddy ill-organized writing, and call it a night. Which is what I am doing forthwith…Good night, and thanks, Mary N, thanks a million again.

PW

Lyme Disease, Mental Health, Psychiatric Unit, Psychiatry, Seclusion and Restraints

Natchaug Hospital Stay and Comfort Room

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I have been away since December 17th, in the hospital yet again. This time the experience – at Natchaug Hospital in Willimantic — was vastly better than the previous two and not abusive at all. I want to tell you about this, but first let me go back to what happened to get me there.

In the beginning of December I began to have trouble again. The “people” came back with their jeering and mockery and commands. A general confusion assailed me. In my journal I recorded many “cries” of MATOOTAM! : “Kill the Ogre that Ate Manhattan” which many of you know means me. I also began to burn myself under the influence of those command hallucinations. I still believe this was all a Lyme disease relapse, but I had been on antibiotics  previously for 8 years – with positive tests for Lyme and other tick-borne illnesses intermittently during that time — without being cured, so there was and continues to be nothing but symptomatic treatment. This means, as my new psychiatrist, Dr C, argues, at least temporary use of the hated, and loved, atypical antipsychotic, Zyprexa. I already am taking Abilify and Geodon, as well as Lamictal for mood stabilization and possible temporal lobe seizure activity. However, as has happened before, these were not effective enough to carry me through such a crisis, which is why I was encouraged to take Zyprexa, 20 mg to head off anything worse. Despite my resistance – I really hate the immediate increase of appetite and weight that accompanies taking it – I did so, I assure you. But the damage was already done and the crisis took on a life of its own, so to speak. By mid-December, I was  no longer “safe,” the code word my visiting nurse among others uses for my listening to the commands the “people” give me. She didn’t know how true that was, though, until I finally admitted it after four days of what I will only describe as obedience to those same commands.  I saw Dr C that Thursday, and though she was uncertain of my safety, she decided that I would talk with her every evening until I saw her again the following Tuesday.

 

The truth is, I do not really recall most of this, neither intellectually nor emotionally. I have had to be told and to refer to my journal in order to recount all of the preceding. However, I do remember what happened next. In addition to the reappearance of the People, I began to experience what I called “brain blips.” These were very brief episodes in which I felt as if my brain suddenly did a somersault, a little like the feeling when your heart skips a beat, except that it was in my brain and accompanied by a terrible dread and feelings of impending doom. After the fraction of a second in which the blip occurred, I would come back to myself – it felt as if for an instant I lost consciousness, but the blip was so very brief that it didn’t seem possible. These episodes were terribly frightening, even though nothing ever happened during or after them, not at least of the dreadful sort I feared.

 

That Friday evening, my heart racing and my mind itself awry, I was in another world, so confused that I wasn’t quite sure what was going on. I managed to call Dr C, who prescribed Ativan. It was too late to call the nurse to pick it up for me so I got in the car to drive the mile to CVS but as soon as I pulled out of the parking lot, the other world took over completely. I do not know how I actually got to the drugstore. I recall only that I could barely hear or see for the pandemonium in my mind but that I was aware enough of the danger to drive only 20 mph the entire way. Once there, however, I didn’t know what to do. I didn’t know how to get home and I forgot about getting the Ativan altogether. Somehow I managed to tell the pharmacist that something was wrong, that I couldn’t drive home, but she thought I meant that the car had broken down, and called a cab for me. I went outside to smoke a cigarette and wait for it, but I was so scared of the shoppers who came and went – the drugstore was open 24 hours a day so anyone in the area who needed something after 10pm came there – that I was unable to take more than a few drags, hiding behind a pillar. I returned to the pharmacist and whispered that there was something terribly wrong, with my brain, that as I felt, bugs had infested it and that I was in another world. Finally she understood and called an ambulance.

 

I won’t go into the drive to the ER except to say that I was so “out of it” that I wasn’t even upset that the EMTs made me get on the stretcher right in the middle of CVS and that everyone saw me being taken out of there. Once in the vehicle, I tried to explain to them that despite the large wound they would discover on my leg, there was something wrong with my brain itself, that this was not a purely psychiatric matter and that I needed medical, neurological care. Indeed, I still feel that way, but much good that did. Once a “mental patient” always a “mental patient” it seems. I admit, though, that having burned my leg did not help much. Still, I tried to explain that I needed an MRI of my brain, that something was wrong, a bleed or parasites or something! You can guess their response: of course, they summarily dismissed all of that and quickly had me packed off to the psych section of the emergency room. Although this is a very comfortable, large and separate unit of the ER, with single cubicles for each patient and a TV but also a video camera in each one, I waited 3 days before a bed was available for me, some 25 miles or more away at Natchaug Hospital, a psychiatric hospital in Mansfield Center, in Connecticut.

 

I name the hospital openly – as opposed to the others I have written about — because it was  amazing in so many ways that I want both to sing its praises and to “advertise” it so to speak, to describe what a really good psychiatric hospital ought to be like. It is true that most people were in for a very short time, Connecticut having virtually no long term beds any longer, not even in the state hospital, but whether acute care or for somewhat longer stays, Natchaug was quite simply the best place I have ever been. From the food, to the – well, let me go into more detail rather than a mere summary (though in my opinion, the food was indeed a cut above that in any place I have been in, both in availability, and, with a salad bar at every meal, quality.)

 

Upon admission there was, to my dismay, a requisite “clothing and body search.” This procedure was done in such a way as to preserve as much dignity and privacy of one’s person as possible but I feared at first that it boded ill for the rest of my stay. Also, I discovered that although there were, I think, two private rooms, I had been assigned a double, a semi-private room, with a roommate already installed. This was upsetting to me, as I had almost always had a single, or been moved to one because the unit staff either felt I was too disruptive or unable to tolerate the stress of a roommate. However, when I saw how the semi-private rooms were carefully partitioned with a floor to ceiling wall in between the bed areas, I was much reassured. Although I eventually did for a short time have a private room, or a double that was designated as private – I frankly do not remember why! – I was not bothered by either roommate that I had while there. The one who did try to get me to – Oh, I dunno. I just am no longer one to “socialize” with other patients and I simply did not feel like getting to know her, or to excessively “sympathize” or otherwise expend my limited energy on her problems. I feel a little bad about this, but this one roommate, the second one, at first tried to involve me in her “stuff” and even left a journal or something next to my bed “for you to read to find out more about me.” Well, this was so very intrusive, and nothing I had asked for at all, that I rudely, but decisively said, “Why would I want to do that?”

 

I know that I would have been terribly hurt and humiliated by someone’s saying such a thing to me, but on the other hand, I would never have been so forward with a complete stranger either. In any event, she quickly took the papers back and left the room. However, a day later, she seemed to have no hard feelings, and we got along, if distantly at least as well as I wanted to.

 

Where was I? Well, I will tell you that the worst thing about my stay, and I suppose unavoidable, since I was there over the holidays, was that I had three different doctors for the three weeks I was there. but the best things were two, or more, but two in particular. One was that there was NO seclusion room, that is to say, the seclusion room that they used to have was not only now designated at the Comfort Room, but in fact was comfortable, and open at most times for use by anyone needing comfort. In it, there were thick mats on the floor, a Grandma Moses-like mural painted on all four walls by artist staff members and best of all a “therapy chair.” This is a very large and comfortable rocking recliner that is built in such a way as to elevate your legs, while you recline against the back, and let your feet dangle over the end. This allows the person to position the very lightweight chair near a wall so as to be able to lightly touch the wall with the feet and keep the chair rocking with little effort all the while lying back and relaxing. Their next improvement planned is to get headphones, wireless, or MP3 players with a  selection of music for additional relaxation and comforting.

 

I usually tell staff at hospitals that they “cannot keep me safe” and indeed “prove” it by obeying in some fashion the commands the People give me…This never exactly endears me to anyone, and in fact has more often than not earned me a reputation as very difficult, even as having a “borderline personality” as an Axis 2 diagnosis (not true). Be that as it may, I was in fact kept safe at Natchaug, and when I was not, I was on a very helpful rather than punitive 1:1 or constant observation. At Natucahug, one-to-one staff were supposed to talk to me, rather than kept from doing so as at other hospitals, “so that you won’t come to like the attention too much.” The few times I became very upset, screaming, just screaming, at the top of my lungs, and rather than choosing to go on my own was escorted to the Comfort Room, by “staff assist” people (there is no “Dr Strong” goon squad of uniformed security guards), the door to the room was open and someone talked to me the entire time. Thus, when I left, on my own, when I felt calmer, I also felt that the reasons that I had been so distraught were also alleviated.

 

Also, although Natchaug, like any other hospital, did have a restraints policy, they did not use them a single time the entire three weeks I was there. In fact, though there was a very disruptive, troubling patient there the entire time (for once it was not I) I do not believe they even came close to considering using them. This time I believe it when they said that they almost never have to use them at all.

 

But the very best thing about my stay was something quite serendipitous: it turned out that the Director of Nursing for the whole hospital is Sharon H, the very same APRN who had been head nurse during my many stays at a Hartford hospital, and who had taken upon herself to supervise my care, or at least seemed to have in some sense “taken me under her wing.” Sharon is, and always was, both extremely bright and compassionate beyond words. She is also insightful in a way that I found the first two doctors I had were not, and if the third was, I did not have a chance to find out because I saw her only 4 times. It is true that Sharon had the advantage of having known me well, if 17 years ago, but still, she seems to have this ability to size up a situation, at least with me, and both to calm me if necessary and to suggest a solution that simply fits…I have to say that I felt especially well taken care of. Sharon made sure she saw me every afternoon, though this was above and beyond the call of any duty.

 

This description scarcely does my stay at this hospital justice. Although, like any hospitalization, it was not an easy stay, nonetheless I can only say that I cannot thank Sharon and the Natchaug staff enough for all that she and they did for me.

(PS Forgive any typos I have not yet corrected but it is getting late and I am too tired to go back and check for them at the present time…Lazy me!)

Appetite, Eating, Nutrition, Schizophrenia, Zyprex

Symptoms, Zyprexa and Recovery Again

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Zyprexa: "The miracle and the monster"

 

Yes, I am kinda sick of this rollercoaster, myself. But there you have it. If I will not or cannot take the medication, and I have no other choice, what is a person to do? I know it is a miracle drug, yet I fight taking Zyprexa at every possible turn. Why? Because, frankly, I cannot tolerate the enormous weight gain it caused the first time I took it – and for many years, off and on. I simply cannot stand being that visible, eating up so much of others’ air, intruding, in truth obtruding into their space as I do  even now…People will ask me questions about some “trade-off” as if it were so easy as that, as if THEY could easily decide, would have no trouble opting to take the drug, and die early from diabetes, which almost a foregone conclusion after becoming obese on Zyprexa. Hell, even without the obesity factor, people develop diabetes on the drug…And that’s only for starters, what about the cholesterol and triglyceride levels  that go up and up? Or is that part of the trade off too? That a person with schizophrenia should not care about elevated levels the way anyone else does…

I have mentioned here, I believe, the recent studies that have shown that people with SZ  become overweight and obese SOLELY on account of the medications. Without these medications, as a group we would tend to be thinner than the average adult. I have suspected this for many years. It would seem to me that every time I read a memoir by someone with sz, they would tell a tale of being a very slim person, until they were plied with some typical or atypical anti-psychotic, at which point they started gaining weight. Now, it was never clear to me whether or not the old drugs really helped much of anything, except to alleviate a few positive symptoms in some people.

Oh, those who disturbed the peace could be quieted, calmed yes,but no one was cured. I met very few people who wanted to take meds because the drugs actually made them feel better. Oh, perhaps they did, since if one got rid of the hallucinations and delusions of course one would feel better. But for myself the old neuroleptics  didn’t work particularly well on either positive or negative symptoms, and the side effects were awful, esp the deadening  lethargy the drugs produced. I would never choose to take any of those drugs and I agreed to take prolixin because it was the lesser evil because otherwise, they would threaten me with consequences far worse…But had I had the choice no way would I have chosen to take any of those drugs.

I’m terribly sorry, but I must stop here. I just wanted to get start on someting, but it is 4 am and I need to go to sleep, plus my eyes are so wonky all over again that I can barely see what I am doing, and at times I cannot at all. My eyes are going nuts again, crossing over or going outwards whatever! All I know is the text dances around and I cannot see through the jumble of letters frlying around. It is hard even to figure out which hand is doing what!

Well, enough for now. I hope to be back here tomorrow, but time has a way of getting away from me…

Certainly, the side effects of drugs like Thorazine were problematic enough to begin with. And count weight gain among them. How is it that any doc in state institutions could not see this correlation? But as you know, “there are
none so blind as those who will not see…”

Art and artwork, Book, Narcolepsy, Poetry, Uncategorized, Writing

Trip to Wisdom House

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I have decided, with Sr Jo-Ann’s help, to arrive at the Writer’s Fellowship on Sunday morning, rather than Saturday evening, so that she can meet me, rather than have me face a crowd of fifty (silent) people alone. It was in fact her idea, but she offered to take me individually on a tour, and show me where to go and so forth, introduce me, which she thought she would have more time for on Sunday morning than on Saturday when everyone else was arriving. This also was a relief for the simple fact that I am so frantic with things I have to get done that it helps to know I have all of Saturday simply to relax and if I haven’t done so before, to pack. It isn’t as if I am bringing a great deal, not many clothes or “stuff”– after all, I am mainly going there to write. But that in itself entails bringing such things as my computer, a printer and a ream of paper at a minimum, and I want to bring a small hot pot and cup and coffee as well, since I cannot rely simply on sheer excitement to keep me awake, no more than I ever can. Not even Ritalin, which as you may know I have taken for decades to combat the nearly constant and excessive daytime sleepiness of narcolepsy, really keeps me alert. In fact, often coffee does a better job…On the other hand, I intend to take Zyprexa every day I am there too, which is sedating. This is just so that I know I will be able to read and stay as unafraid of things as possible. Once I get home, I’ll stop taking it, but why not keep on top of things as long as I am there?

I have written several poems in just the last week, but alas, I am unable to share them here.  I have learned that many contests and publications do not allow the appearance on the web of poems you want to submit to them or enter there, or else they will be disqualified. Thus I can only post ones that I am certain I will not try to publish or else that have already appeared in my book or previously in another journal, review or magazine. I wish that were not so, as I am thrilled with some of these poems. I also wish that I had not been so quick to enter a few of them into a certain contest, as with a little more rewriting, say, the 110th version rather than the 100th, I might have felt even better about them. Ah well, too late for recriminations. If a given poem is not accepted where I sent it, there are a thousand other venues that might take it when I submit it again.

Enough for now, it is already late and I needs must (how’s that for an archaic expression?) get to work finishing up the dishes and printing out poems. I will need at least 60 for my second book and I have to have copies I can work on at Wisdom House. There are a dozen other things to do before I go to bed tonight…zo I will bid you adieu, au revoir…

I hope I can post something from Wisdom House next week, but if not, I will do so when I get back. Hasta la vista!

Appetite, Blog, Eating, Medication, Nutrition, Schizophrenia, Uncategorized

My Pyramid Tracker, plus Another Medication Change

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Before I tell you about the most recent medication change, I want to let you know about  My Pyramid Tracker at  http://www.mypyramidtracker.gov, a website of the USDA’s Center for Nutrition Policy and Promotion. My Pyramid refers to the new and improved USDA food pyramid (http://www.mypyramid.gov) which, by the way, recommends only five and a half ounces of meat or beans a day, which is just a little over a quarter of a pound. The pyramid tracker website is one I highly recommend, however, especially  if you are interested in losing weight or in keeping track of what you eat and how much you exercise. In fact, it is a website worth looking at even if you are only curious about how many calories you expend in everyday activities. You can use it  every day or once a week or on any schedule you choose, and all you need to do is follow the easy instructions at the end of any given day to see how you did, though it helps if you jot down what you eat during the day, so you don’t forget entirely. Every time you log in, the site keeps track, so you can see stats later on about how you are trending.

My Pyramid and the Pyramid Tracker are great sites for general nutrition info, calorie calculation and the general calculation of energy expenditure in your daily life. You can compare what you expend to your daily calorie requirements. That is, by counting such activities of daily life as dish-washing and childcare and yard-work as forms of exercise the site will tell you how many calories you expended on them. It also calculates your BMI — body mass index — your ideal weight, and how to achieve it as well.

Click this

If you happen to be interested solely in finding out how many  calories are in a given food, however, the Nutrient Data Lab website is great. It has a large number of brand name foods as well as fresh and raw foods as well: http://www.nal.usda.gov/fnic/foodcomp/search/index.html

Should you be on medication that causes weight gain, or makes it difficult to lose what weight you formerly put on, check out those sites (above). They could make a big difference, or at least be a helpful tool in your efforts to keep your weight under control. But two things nonetheless are very important:

Please, do not beat yourself up if you cannot lose weight.

Remember that will power is a matter of chemistry, not bad character.

In fact, in FACT, it is your meds and the chemical changes that they produce in your brain that has caused you to gain weight. It is NOT your schizophrenia and it is NOT your fault. Do not believe whatever they say about research “proving” a close link between your diabetes and your having schizophrenia. That is utter B.S. Diabetes is on the rise everywhere in the country and its increase is directly related to obesity: one gets obese because one eats more calories than one expends. Being more than a little overweight is known to be a huge factor in Diabetes, type II (insulin insensitivity).

Now it is true that you might have been or become overweight without the meds, but I assure you that certain meds all but guarantee it. When researchers have the gall to say that somehow obesity is directly or in some sense causally related to schizophrenia, or that diabetes is genetically connected to schizophrenia, that is a load of hogwash, and I suspect those researchers are on the take from certain well-known drug manufacturers. I’ll bet that for many of you who were once thin before you took medication, whether it was the older drugs or the newer atypicals, it was only when you started taking antipsychotics (and some antidepressants as well) that you began to gain weight, sometimes massive amounts. But “they” want to tell you that it has “nothing to do with the meds” no, it is YOU, it is your illness, not the Zyprexa or the Seroquel or the Risperdal that caused the weight gain, or for that matter, not the Thorazine or the Mellaril or the Prolixin. We know better. They also want to tell us that if we die 25 years earlier than our peers, that is our mental illness speaking or our own fault (somehow) and not their iatrogenic — that is to say, medically-caused, doctor-caused —  drug-related obesity, diabetes and heart disease. I won’t even mention the generally dismissive attitude of many doctors towards the physical complaints of anyone with a major psychiatric diagnosis, it is no minor problem.

So, what to do? Well, there is not much you can do at this time, if you have found a med that works well for you and are able and willing to tolerate the weight gain and potential side effects from it. In some ways I admire those who will make this trade-off, though I worry that they will lose their new found lives early because of it, in which  case is it really worth it? But I know that for some people it indeed is, and I would never question their choices. For me, I am lucky enough to have responded to at least one less-weight problematic drug besides the miracle drug/drug from hell Zyprexa, which is the combo: Abilify/Geodon. The Geodon by itself seemed to me virtually worthless, at least it seemed to do almost nothing for me in terms of improving my cognition or creativity. The Abilify vastly increased my cognition and such, but at the expense of extreme irritability and rage. However, the serendipitous co-administration of the two solved the problems of each so that now I can feel creative and cognitively less impaired (I still cannot read, alas) and yet I am not at all irritable or enraged. Added to that is the fact that my appetite is under control again. While I have not yet started to lose weight, which is already at a decent level, according to most people (just not me) I no longer find myself raiding the fridge constantly or exhibiting uncontrollable food-seeking behavior all day, hungry or no. It feels much better not to feel yanked around by the nose by a med that never let me feel in control of myself…

But what happened to the Saphris? Well, two things: one, I simply could not sleep, and that is a weird thing for someone with narcolepsy to complain of! It was great to be awake all day, but I was awake all night as well. I would but up except for an hour or two for days on end, and it was exhausting. But worse, according to my psyche, was the fact that I ate less than 700 calories a day, walked 8 miles a week, — keeping track via mypyramidtracker.gov and the nutrient data lab — and yet after 2.5 weeks, I didn’t lose a single pound. This was so terribly depressing that I had to change it, had to go back to the Geodon and Abilify on which I got to the weight I was truly comfortable at a couple of years ago…Now, though, I have to try hard, and i will, because I am determined to get there. My father is always saying, Appetite comes in eating. Well, he is absolutely correct. But the opposite is also true, because the less I eat, the less I want, and the more I forget to eat, the more I, well, forget to eat…As far as I am concerned that is fine with me.

I think that is all that I have energy for today, because I want to continue to read Karen Sorensen’s site and blog, which I haven’t seen for a long while. Her art is so creative. It might be called, as my professionally trained artist friend said, Outsider Art, but nevertheless she has such an imagination that I feel stunned. I simply cannot let myself go and “let it all hang out” as we used to say in the “old days.” I don’t know how to do it, not graphically. Not pictorially. I am so hung up on getting my pictures and portraits perfect that I cannot relax and let my mind run free. I can do so in poetry, let things happen, and to hell with what my inner self is “really” saying, Let the shrinks figure it out! But in a painting or collage, I have to be in control, I don’t know why. Perhaps because I am so new at it…?

Thanks Karen. I love your gallery, where I can “flip through” your art works and see them en masse.

I also have to visit Kate Kiernan’s  Ying and Yang blog as her writing is as good as her art, which is saying a great deal. I am not sure which I like better, though I don’t really need to choose, as her writing is very different from her paintings. Kate is also a terrific songwriter/singer as well. On her blog you can sample all three. She is truly one of the most talented people I know.

You can find both Karen’s and Kate’s websites on my sidebar.

Appetite, Eating, Medication, Mental Health, OCD, Uncategorized

The OCD Project on VH1

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I have to tell you that I do not usually watch VH1. In fact, thinking that it was always and only a music channel, and moreover that it featured music of the sort I do not generally enjoy, I have never watched it. But I was up all night last night because I couldn’t fall asleep and I was channel surfing, trying to “bore myself to sleep,” only to come across their amazing program, The OCD Project. Yes, it is comes under the rubric of a “reality show” and the OCD sufferers featured might in fact be “on stage” in the same way that I suspect those  “Housewives of New Jersey” on Bravo Channel are (the dames in that show must be acting, they are so ridiculous!). But it is hard to believe this is the case. Even if I am wrong, it doesn’t matter, because if they are performing in any sense of the word, the enactment of the disorder of OCD is so compelling and the treatment so gritty and potentially life-changing that I am going to recommend it to everyone who happens across this post.

Please, whether or not you have schizophrenia, bipolar or Lyme and you have come to this site because of those: if you have any interest in or symptoms of OCD, check out THE OCD PROJECT at the following link. Once there, scroll down to the links to the full episodes. Click on Episode 101 first, then the clips to 102, then the full episode 103 and you will be all set for Episode 104 when it appears either on TV or on the website.

Good viewing! I think you will be impressed and may learn a lot. I know I did. Let me know what you think.

Perhaps more important, let the producers of the show and of VH1 know your feelings, because such programming about mental illness is so very important and their efforts in that direction ought to be encouraged.

http://www.vh1.com/shows/the_ocd_project/series.jhtml

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Brief update:

The Saphris and Abilify continue to do me good without causing any particular harm or objectionable side effects. Except for the pills’ bad taste and brief oral anesthesia after taking Saphris –surely a tiny price to pay for what seem to be big benefits — I can’t think of anything I would improve about it. Perhaps it would be good to feel inspired to get back to “doing artwork” again, which has not happened. Not yet.  But I think this may be due to the fact that I have been focusing on writing poetry to the exclusion of almost everything else. On the other hand, I can read, a little, which is good, though it takes some effort to sit with a book and concentrate. When I decide to make the time and do it, I can. I am also, I think, losing the weight I gained on Zyprexa, slowly but surely, which is only to be expected, since the Abilify has all but caused my appetite to vanish completely. I am back to forgetting to eat, rather than emptying the fridge at all hours of the day and night.

That brings me to the subject of another post I will write soon: how drugs affect the appetite and how my experiences with Zyprexa and Abilify make me certain that while appetite may be all in the brain, it is “brain-chemistry” for everyone, even for those who do not take medications. It has virtually nothing to do with so-called willpower.