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The esteemed Frau Doktor O, my psychiatrist and sleep specialist, doesn't want to go the Zyprexa route, at least not now. I think she remembers all too clearly my anguish when I took it last time and the struggles we had so often over my continuing to take it as prescribed.
Although I still miss it immensely, I can't say I'm not a little relieved to have the decision out of my hands, because I know there was always ambivalence...Argh! How can a medication be so incredibly helpful and so terrible at one and the same time? BTW: a message to Samantha, if you read this entry: I admire you and your fortitude, your lack of that demon vanity, to stick to your guns and take the Risperdal despite the weight gain, because you know that you are much better on it than another drug...I hope for your sake especially that they come up with a solutiion to help you continue and yet also be healthier physically.
Right now, I am off the Haldol, but still on Geodon and Abilify and fighting to get off the Geodon. I did get off all the Trileptal, without a return of the olfactory hallucinations, so my double visiion has cleared up. That's another medication I'm off now too. We are changing from Luvox to Effexor, which used to work well and carried me through several years of deep depression. I'm hoping that this change will be enough to help motivate me out of my apathy and listlessness. We'll have to wait and see, though, as it will take a while to make the switch completely.
I dunno what to say about how I am doing these days. I am presently staying with my sister, to work on speeches for upcoming engagements, three of them in one week. But I sit around doing very little. I spend a lot of time on the computer, mostly checking for and writing e-mail or looking up things on the net, but I barely get up off the couch and have to be talked into leaving her condo...I do joke with her and talk and laugh enough so neither she nor her love know how I feel, and I wouldn't want them to. They've been through enough with me!
Anyhow, I think after writing this I'll go watch the comedy channel again to cheer myself up and get out of this mood. Because as Lynnie sometimes says, when I call her, down and crying, "It's a feeling, and feelings pass." She tells me to get up and make myself stop thinking, do something, watch a comedy until I laugh and am no longer thinking about the things that bring me down...It sounds too pat and easy, but I assure you, for those lower than usual moods, it really does work. And tomorrow does come and the feelings don't last.
Now I'm going to change my tune completely. When I said Xyrem was a miracle drug, I wass taking my doctor's opinion and my sister's and making them my own. But in actuality, my own, as I have stated elsewhere and still stand by, is somewhat different.
Let me explain a bit. Xyrem is indeed a wonder drug in terms of getting me a good night's deep sleep, which god knows I needed, after year's of gliding along in and out of the superficial layers of sleep, dreaming sleep and waking, such that even awake during the day, I was often literally in a dream, and could not always tell the two apart, even when not psychotic. So I sleep well, despite having to wake in the middle of the night to take the second dose.
And sleeping well may have spurred my courage to take bigger risks, like trying new things -- wearing red, hugging people who want hugs, looking at people etc. But these things, while I do them, are not easy for me. I still do not like them. I simply endure them because they are good for me, or liked by other people. I don't care about red, which is in fact growth, but I wear it mostly so that people will think I feel red in mood, cheerful, happy, sanguine etc
In point of fact, my mood is declining slowly and it's hard to tell anyone because they will worry too much that I'm decompensating. And I can't do what I want to do, becuse I don't have the energy or motivation or drive to do it. I don't even much "want to do it." So I don't take a walk because it takes too much to put on my sneakers and coat. I don't drive the car because to get downstairs and out the door takes too much effort and energy...I don't take a shower because the needles of water take too much fortitude to endure any longer, and I can't get up the whatever it takes to endure it for the sake of proving I will take a shower.
Being off Zyprexa my cholesterol has dropped from 274 to 174 and my wgt from 170lbs or more and going up, to a too thin 98lbs, which is good, but I've also dropped ALL my many magazine subscriptions because I no longer have the interest or motivation to read them, and I can't get into any article when I try. I gave away 400 of my precious books, and 100 videos because I figured I would never read them, having gone off Zyprexa and lost all the interest I used to have...
Zyprexa is a troublesome drug, causing obesity in many and predisposing just as many to deadly diabetes and hypercholesteremia as it did me. There should be a solution to these terribe side effects. It is also extremely sedating, which detracts from its value as a miracle drug, except that my doc, as a sleep specialist, is willing to treat the somnolence aggressively, so I never had to worry.
But as I wrote years ago, when I first was taking it and described it as a miracle drug, I would do so still. I recall with a thrill how it brought brilliant color into a drab psychotic world, how I developed interest in the world around me and could finally learn and participate in it. How I felt smart and quick and intellectually bright as a new penny and was fascinated by everything, and was happy and eager to start every day...until the weight gain began to oppress me.
I still enjoyed my mind, I just felt self-conscious and ugly in my body, which caused me great anguish and led to many terrible consequences when the voicees returned and demanded me to hurt myself...But I'd give my eyeteeth to take it again, and solve the side effect problem, just to feel life return again in all its vibrancy and zest...Talk about a problem of ambivalence! I love the drug, and I hate it at the very same time. But it was the best drug I was ever on, except for the side effects. And except for the side effects I'd take it again in a heartbeat. Lilly, do something!
I wanted to add a few words to my last entry about Xyrem. First of all, the other drug cocktail apparently treated my more florid positive symptoms, but according to my twin, the psychiatrist, the Xyrem treated the negative ones, made me seem normal: all the things I could do truly did knit together. She didn't know I was on it, but when I appeared at her door after being on it a while she opened the door, took one look at me, stepped back, and said, "Oh. My. God." Then she rcovered a bit and said, "You look wonderful, normal." She says I looked her square in the eye, was wearing something colorful for the first time in decades, had curled my hair and was even wearing make-up like I actually cared how I looked, and she couldn't believe it. She said my walk was almost normal, that I was less awkward in my body and so forth. She felt like she had her twin back. So that's really what Xyrem did for my SZ.
There's a story here that I haven't told completely because I haven't wanted to muddy the waters or get people's hopes up for a drug that might help one person in a million. |But the esteemed Dr O thinks I shouldn't be so reticent, that I should explain what happened in full, because research is still being done and who's to say what might be helpful or not in other cases of SZ. So here, forthwith, is a fuller story of how I recovered.
I said in my keynote speech, if you've read it, that the first step, beyond choosing life over death, was vowing to take every medication I was prescribed as prescribed, without fail, until the doctor's orders changed. That certainly stabilised me to the point where I stayed out of the hospital, though I didn't feel particularly well. Then, I finally agreed to try a drug Dr O had been pushing me to take for a year, Xyrem, a night-time drug for narcolepsy, meant to regulate sleep, help one attain slow wave sleep, and thereby enable one to be more awake during the day. If one were awake during the day, the spells of waking dreaming would happen less often, one would be more alert on fewer stimulants, and sleep attacks would cease...among other things.
Xyrem is not a drug without a difficult past. It has faced bitter controversy, even being discussed in congress, over whether it had therapeutic uses. Luckily, the testimony of the persons with marcolepsy was convincing enough to save the drug from being banned outright. So it is now available from a central pharmacy as an orphan drug, schedule III or IV.
It is however a difficult drug to take, and I admit that not matter how quickly I get it down, I dread it each time. It's a liquid, just a tiny amount, maybe 6ml, mixed with water or grape juice and taken just before bed. It's foul tasting so you have to dilute it well, but not more than they say. Then, the worst part, you must pour a second dose, put it on your nightside table, set an alarm for 3-4 hours later, wake and take a second dose, no matter how deeply asleep you already were!
BUT the effects can be felt within two weeks if you're lucky, though it takes months for some, and for me it was the miraclous 12 days. My improvements had _nothing_ whatsoever to do with narcolepsy though, that's the strangest thing. Those did take months to appear. What improved were the last symptoms of my SZ!
It was astounding but the last little but still important things just fell away: I began to look at Dr O and finally knew what she, and certain other people, looked like; I began to gradually, shade by shade beome desensitized to the color red, which had terrorized me for decades; when the night nurses (visiting) asked me if had been hearing any voices that day, I could honestly answer, None! I felt no paranoia, had no trouble distinguishing reailty from non-reality, and for the first time began to understand why my delusions _were_ delusions and that my voices were only inside my head and false perceptions.
Since we hadn't started or stopped or changed any other drug in a long time, it seemed certain that the Xyrem was responsible for this miracle. I really don't have any idea if it would work for anyone else. Dialysis worked for Carol North, who wrote WELCOME SILENCE but since then has worked for no one. So I may be the ONLY one that Xyrem helps. Buta nagging part of me says isn't psychosis often described as a waking nightmare? If Xyrem helped them go away, literally, for me, (it is part of narcolepsy), who's to say what it would do in SZ...
The problem now, however, is emphatically not the same as when I was young. For one thing, to have anorexia nervosa, you have to feel fat when you are thin, and I feel quite thin, thank you very much. In fact, I probably feel thinner than I actually am, which is the weirdest thing. And the other requirement is that in anorexia you do have an appetite, you feel terrible hunger, you just deny it so you won’t have to eat. Those tiny little girls you see walking around, bundled up in their sweats even in summer because they are so cold, are starving, aching to eat, but won’t because they know they can stay in control and refuse to let themselves.
For myself, I eat at the first feelings of hunger; the slightest sensation that I might be hungry sends me scurrying to the refrigerator for at least a little something. But I rarely feel hungry at all. I have little appetite and food therefore is mostly unappealing. I do make myself eat something, but mostly because I’m afraid I could die of a heart attack if I don’t eat anything at all, though I suppose that only happens when a person binges and purges...And I’m certainly not thin enough to die of starvation! I just get scared of where this lack of appetite could take me.
But to be perfectly honest, though I have no more need to be invisible, don’t feel either fat or hungry, something else keeps me from taking the necessary measures to gain some weight, something that started out bizarrely.
The bizarre thing is that when I weighed 160-180lbs I felt thin! I did not feel like the fat person I was. This was probably due to having been thin most of my life and having developed a body image as a thin person. But whatever the case, I did not know I was fat by the ordinary measures. Even sizes of clothes didn’t affect this. When I wore an extra-large or size 18, I felt that that was actually small, somehow, don’t ask me the reasoning! I even saw myself in the mirror as small. The only times I knew I was fat was in photographs, and by the numbers on the scale, neither of which lied. I avoided both, because they caused me so much anguish, but I couldn’t avoid them forever, especially since I was in and out of the hospital, where the first thing they do was weigh and measure you!
So I feel thin now, I feel too thin, though I’m only slightly underweight by the body-mass index. Yet those numbers, 102lbs, mean a lot to me, they mean, well, what do they mean? They mean that I am indeed thin again, not that I just feel it, though I have to remind myself daily it’s something real. They mean that though the weight came off easily, gradually, though faster and faster towards the lowest point, I lost a lot. They represent safety. They represent acceptability. They mean all sorts of things. BUT, and here’s the rub, I don’t know that even lower numbers might not be better, just the numbers somehow, more safety, more acceptability, NOT the thinness...but I can’t get the lower numbers out of my head. That in a nutshell is the problem and I’ll be darned if I know the solution. Until I find it, though, Paula K’s kind and sage suggestions will fall on stubbornly deaf ears.
I seem to have developed a new problem, or a recrudescence of a very old problem to be precise, because of the old problem of weight gain that I had with the Zyprexa.
As those of you who have read the book know, I spent many years very underweight from my teens on, laboring to become "one with the wind" or to disappear from visibility altogether. Although the book does not belabor the point, since it is not the main subject matter, I weighed between 74lbs and 85lbs during much of the years between 1967-87 (with a brief break in the years during which I studied for and attended medical school, when I deliberately let my weight rise to 110lbs).
After 1987, feeling imprisoned, I began deliberately desensitizing myself to being visible, by looking at people and watching them eating (surreptitiously of course) and seeing that whatever weight they were at they didn't seem to mind being seen by other people, at least in the sense of not being invisible. They talked to friends, the LOOKED at friends, they seemed to have a good time being visible. And gradually my weight rose over the years until when I actually decided to give up my obsession and eat normally, I didn't gain any weight at all!
I stayed at about 100lbs for many years, until cumulative antipsychotics, esp prolixin shots twice a week, and then Clozaril, then Xyprexa started rapidly putting the pounds on. I gained up to 120lbs and tolerated it okay on the prolixin, because I trusted the nurse clincian who treated me when she said I was doing a lot better on the shots, and indeed I was writing poetry in a white heat and also because I had this weird mental thing: I had been thin for so long, I still felt like a thin person, and so failed to "see" myself as a person of normal weight, a blessing in fact. But the CLozaril, which after three long trials had to be stopped because of the precipitous fall in my white cell count, was another thing, and after came Zyprexa and you know what happened then!
On Geodon, which I started in mid-2004, I lost weight right away, from somewhere in the 170's (my doc says 160's; I say 180's and I weighed myself more often) down to 144lbs where I got stuck for months. Then effort brought me to 130lbs, where I got stuck but wasn't too unhappy because I'd come from the 170's. That was in August 2005 ...Now I weigh 102lbs... and I'm 5'3" and my backbone shows and my ribs stick out and...you can imagine (unless you are anorexic in which case that sounds heavy!) But to me it's a problem....(To be continued in another entry...)